(The First) 2007 cd fundraising letter
Hello friends,
I hope that all is well with you and you are headed toward a happy and healthy Holiday season. As many of you know, I have been making a yearly tradition of scouring the earth for Christmas songs that are actually enjoyable to listen to, and then putting together a cd to hand out during Christmastime. This tradition started in 2002, when I decided that I actually liked Christmas music, despite the fact that the songs played at the mall, in Best Buy, and on the radio positively made my skin crawl. So I took matters into my own hands, burned some tracks onto a disc, put a self-deprecating picture of myself on the cover, and handed out a few copies as Christmas gifts. It was such a hit that the tradition has been growing since then, and last year in 2006 I gave away 75 free copies of "Hey! Hey! It's A Monkees Christmas Mystery." I have been working diligently for the past few months, sifting through hundreds of sub-optimal Christmas tunes that didn't make the cut this year (have you ever heard Regis Philbin's It's a Marshmallow World? Please make sure that you don't. Ever.). I've just finished 2007's edition: "Gone Fishin' for Christmas."
But this year I want to do something a little bit different- I'd like to ask that if you would like a cd, to please make a donation to the Cystic Fibrosis Foundation. The Cystic Fibrosis (CF) Foundation is the primary sponsor of critical research that is making tremendous advances toward a cure and control of Cystic Fibrosis. This is a cause that is very close to my heart. As many of you know (and many may not), Cystic Fibrosis is something that I have been dealing with every day for all of my 29 ½ years of life so far. I am thankful for every one of them. The doctors, treatments, and medications that I have received have made profound differences in my quality of life and the fact that I am alive at all. In 1955, children with CF were not expected to live even to first grade. In 2000, the predicted median age of survival was 32 years of age. Amazingly, just five years later, in 2005, the predicted median age of survival rose to 36.5 years. I plan on continuing to stay ahead of all of the averages that have been put on me since birth, but the steady rise of the median predicted age of survival illustrates that improvements in treatment are advancing the lives of people like myself with CF. It is not something that I like to talk about (OK, I never talk about it), or bring up with people (OK, I never bring it up), but I felt like I needed to start giving back to a cause that has given me so much. It's a well run organization- nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education. Plus, it's easy to donate- you can donate in person with cash, send me a personal check (made out to me), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/GiftReg/JamieCarr and just click to donate). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. In addition, your contribution will be doubled as all donations made between now and December 31st, 2007 will be matched by an anonymous donor.
OK, enough of that, this year's cd is awesome- it features some great Christmas tunes that you have never heard before. Have you heard a Christmas song from Pearl Jam? It's on there. A Christmas song from Elton John not called Step into Christmas? It's on there. There's a great new song from The Killers- A Great Big Sled . Try getting that song on cd for less than $30. Andrea's new favorite Christmas song is Frank Sinatra's The Christmas Waltz- do you know that one off the top of your head? There are plenty of others from Barenaked Ladies, James Taylor, Brian Setzer, Brenda Lee, Stevie Wonder, The Ventures, Marvin Gaye and more! I have also been hard at work making up copies of past year's cd's so that people can get their hands on those. They are each packed with great songs. I am just asking for a minimum of a $10 donation for each/any cd's that you like.
So please consider making a donation, you can get a great a cd for yourself, or think about purchasing several as stocking stuffers. How about those people on your Christmas list that already have everything?- they won't have this! They make great gifts that people really appreciate, as last year I was getting notes in my mailbox from my mailman as he was trying to solve the Monkees Christmas mystery. Feel free to make a donation irrespective of your affinity (or aversion) for Christmas music as well; I will still be happy if you make a donation and tell me that you have only been using the old cd's as coasters so don' t bother sending any. ;) Just let me know. If you are one of those on this list that often buys me a Christmas present, please consider making a donation in that amount instead of buying me anything.
I will be sending a second e-mail with the album covers and track listings attached in a Word Document. Please feel free to forward this to anyone that you think might be interested in some Christmas cd's or in making a donation. My apologies to anyone that receives this at multiple email addresses.
Thanks, have a great Holiday Season, and enjoy the music!
Jamie
I hope that all is well with you and you are headed toward a happy and healthy Holiday season. As many of you know, I have been making a yearly tradition of scouring the earth for Christmas songs that are actually enjoyable to listen to, and then putting together a cd to hand out during Christmastime. This tradition started in 2002, when I decided that I actually liked Christmas music, despite the fact that the songs played at the mall, in Best Buy, and on the radio positively made my skin crawl. So I took matters into my own hands, burned some tracks onto a disc, put a self-deprecating picture of myself on the cover, and handed out a few copies as Christmas gifts. It was such a hit that the tradition has been growing since then, and last year in 2006 I gave away 75 free copies of "Hey! Hey! It's A Monkees Christmas Mystery." I have been working diligently for the past few months, sifting through hundreds of sub-optimal Christmas tunes that didn't make the cut this year (have you ever heard Regis Philbin's It's a Marshmallow World? Please make sure that you don't. Ever.). I've just finished 2007's edition: "Gone Fishin' for Christmas."
But this year I want to do something a little bit different- I'd like to ask that if you would like a cd, to please make a donation to the Cystic Fibrosis Foundation. The Cystic Fibrosis (CF) Foundation is the primary sponsor of critical research that is making tremendous advances toward a cure and control of Cystic Fibrosis. This is a cause that is very close to my heart. As many of you know (and many may not), Cystic Fibrosis is something that I have been dealing with every day for all of my 29 ½ years of life so far. I am thankful for every one of them. The doctors, treatments, and medications that I have received have made profound differences in my quality of life and the fact that I am alive at all. In 1955, children with CF were not expected to live even to first grade. In 2000, the predicted median age of survival was 32 years of age. Amazingly, just five years later, in 2005, the predicted median age of survival rose to 36.5 years. I plan on continuing to stay ahead of all of the averages that have been put on me since birth, but the steady rise of the median predicted age of survival illustrates that improvements in treatment are advancing the lives of people like myself with CF. It is not something that I like to talk about (OK, I never talk about it), or bring up with people (OK, I never bring it up), but I felt like I needed to start giving back to a cause that has given me so much. It's a well run organization- nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education. Plus, it's easy to donate- you can donate in person with cash, send me a personal check (made out to me), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/GiftReg/JamieCarr and just click to donate). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. In addition, your contribution will be doubled as all donations made between now and December 31st, 2007 will be matched by an anonymous donor.
OK, enough of that, this year's cd is awesome- it features some great Christmas tunes that you have never heard before. Have you heard a Christmas song from Pearl Jam? It's on there. A Christmas song from Elton John not called Step into Christmas? It's on there. There's a great new song from The Killers- A Great Big Sled . Try getting that song on cd for less than $30. Andrea's new favorite Christmas song is Frank Sinatra's The Christmas Waltz- do you know that one off the top of your head? There are plenty of others from Barenaked Ladies, James Taylor, Brian Setzer, Brenda Lee, Stevie Wonder, The Ventures, Marvin Gaye and more! I have also been hard at work making up copies of past year's cd's so that people can get their hands on those. They are each packed with great songs. I am just asking for a minimum of a $10 donation for each/any cd's that you like.
So please consider making a donation, you can get a great a cd for yourself, or think about purchasing several as stocking stuffers. How about those people on your Christmas list that already have everything?- they won't have this! They make great gifts that people really appreciate, as last year I was getting notes in my mailbox from my mailman as he was trying to solve the Monkees Christmas mystery. Feel free to make a donation irrespective of your affinity (or aversion) for Christmas music as well; I will still be happy if you make a donation and tell me that you have only been using the old cd's as coasters so don' t bother sending any. ;) Just let me know. If you are one of those on this list that often buys me a Christmas present, please consider making a donation in that amount instead of buying me anything.
I will be sending a second e-mail with the album covers and track listings attached in a Word Document. Please feel free to forward this to anyone that you think might be interested in some Christmas cd's or in making a donation. My apologies to anyone that receives this at multiple email addresses.
Thanks, have a great Holiday Season, and enjoy the music!
Jamie
2008 cd fundraising letter
Hello,
I hope that this letter finds you well!
There's been a good buzz of anticipation this year for the annual Christmas cd, so thank you for your e-mails and questions. I have been acquiring, editing, sorting and listening to Holiday tunes flat out for the month of November to try and get a 2008 Christmas cd
I absolutely could not believe the financial support that friends, family, coworkers, and strangers showed last year in helping me to raise $3,798.00 for the Cystic Fibrosis Foundation in 2007 (due to the donation match last year this resulted in just under $8,000 being donated!!! That can make a difference!). I was amazed at the generosity shown by all of the people that donated, and it made me feel very fortunate to know so many generous people.
However, I think the moral support that I experienced was even more impressive than something with a dollar amount. I was simply not feeling very well last winter. I went for at least 3 months without feeling "good" for more than a day or two at a time, and I was just not feeling like myself. I was really starting to have some concerns about life as an adult with CF, and I think reaching out with a cd fundraiser was one way to help me deal with that. In February of 2008, after talking it over with my Doctor, I decided to schedule a stay in Mass General Hospital for a "cleanout." This had always been a dirty word for me, as I had managed to put off for a long time what is often a regular treatment option for many CF patients. I usually get by with the oral and nebulizer antibiotics I take all the time at home. But, I agreed to go in for a cleanout, which was initiated with 4 days in the hospital to ensure that the heavy duty doses of IV antibiotics were being administered at the correct levels and weren't having any serious side effects. I continued the IV treatments for a month via a PICC line that was put in so I could administer the drugs from home (or work or wherever). Once through that my lungs seemed to respond really well, and it felt like I had the "reset" button pressed on my health. I had way more energy, enthusiasm, and was able to laugh much harder at my own jokes!
That set the tone for what was to become a great 2008- being able to get out for some spring fishing in MA and Maine, having a wonderful surprise Birthday thrown for me in July (where Chris Trapper performed our wedding song live for us on our front lawn!), taking a once-in-a-lifetime- trip to Alaska (where my beautiful wife Andrea enjoyed the salmon fishing as much as I did!), and finally I am now excited to announce the best news of all: Andrea is pregnant! Unbelievable. Things have gone smoothly thus far and she is about 3 months pregnant right now and due next June.
Sorry for the long intro- but all of this is the set up to say that I have put together what looks to be a great 2008 Holiday cd, and I will be asking for donations again this year to raise money for the Cystic Fibrosis Foundation. I knew I had my work cut out to try and come up with another cd as strong as the "Monkees Christmas Mystery" and Gone Fishin' for Christmas." But after digging in and scouring the internet and getting a lot of good tips from you guys I am proud to present: "It's Christmas Every Day in Alaska!" for 2008. I think this cd might raise the bar! But I'll let you decide.
You can view the album track list and cover art (for this year and years past as well) within the .pdf file attached to this e-mail. The title track from Hank Thompson may just be the only Alaska Christmas song out there - it is the only song that comes up in the Allmusic database that has both "Alaska" and "Christmas" in the title. This year's offering includes tracks from: The Who (live at Leeds in 1970), The Three Stooges, Black Sabbath, Death Cab for Cutie, The Darkness, Peter, Paul and Mary, Alabama, Bing Crosby, Paul McCartney, and more. Chris Trapper appears (courtesy of Starlit Records) in the coveted #24 slot. Chris has written and recorded some great songs on his album "It's Christmastime" (see www.ChrisTrapper.com), and was also generous enough to grant permission for the use of his beautiful song "Thorn Becomes a Rose" on this cd.
Again this year I am asking for a minimum $10 donation if you'd like a cd. All past years of cd's are available as well for donations of $10 per cd. Multiple cd orders are welcomed and encouraged as they make great Christmas gifts and stocking stuffers. I am trying to ramp up production this year a bit so pass the word around to friends, neighbors, coworkers, etc who might be interested.
New this year, I have had some 2009 calendars printed up with some of my nicer photographs that I've taken during my travels matched up to an appropriate month of the year. You can view the pictures I used to make the calendars at: http://picasaweb.google.com/carr24 (click on the 2009 calendar folder). Calendars are available for a $20 donation (While supplies last!).
If you would like to donate but do not want me to send you any homemade treasures- don't worry- I won't be offended!
It's easy to donate- you can donate in person with cash, send me a personal check (made out to me), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/GiftReg/JamieCarr and just click to donate- where we will be building onto last year's total). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. The CF Foundation is simply one of the best run, most efficient, and productive charities you could hope to donate to. You can find out more information about the CF Foundation if you'd like at: http://www.cff.org/aboutCFFoundation/.
If you are still reading… there are two nominees for worst Christmas song I found this year- the first is like having bees crawl in your ears and make it to your brain. It's the Christmas Macarena. Oof. Basically it's the Macarena song with someone saying "Christmas" right before "Macarena." Quite painful. The second falls into the category of so bad, you think it's a joke, or a parody, or you are missing something. But then there's no punchline, and you are just left scratching your head listening to an awful song. That description belongs to Ozzy Osbourne and Jessica Simpson's duet of "Walking in a Winter Wonderland." Amazingly enough there's also a video for this song on Youtube- at first I thought it was a saturday night live skit or something!?
Thank you very much to all of you who have sent me songs, cd's, or suggestions for additions to the annual christmas cd's. It's a big help. Even if your songs are not on this year's cd listen for them in the future. Thanks to: Uncle Big Jim, Alan C, Tony D, Rod L, Art J, Brian F, John F, Jared C, Dave B, Richard C, and others I'm sure I forgot.
Happy Holidays!
Peace, Jamie
I hope that this letter finds you well!
There's been a good buzz of anticipation this year for the annual Christmas cd, so thank you for your e-mails and questions. I have been acquiring, editing, sorting and listening to Holiday tunes flat out for the month of November to try and get a 2008 Christmas cd
I absolutely could not believe the financial support that friends, family, coworkers, and strangers showed last year in helping me to raise $3,798.00 for the Cystic Fibrosis Foundation in 2007 (due to the donation match last year this resulted in just under $8,000 being donated!!! That can make a difference!). I was amazed at the generosity shown by all of the people that donated, and it made me feel very fortunate to know so many generous people.
However, I think the moral support that I experienced was even more impressive than something with a dollar amount. I was simply not feeling very well last winter. I went for at least 3 months without feeling "good" for more than a day or two at a time, and I was just not feeling like myself. I was really starting to have some concerns about life as an adult with CF, and I think reaching out with a cd fundraiser was one way to help me deal with that. In February of 2008, after talking it over with my Doctor, I decided to schedule a stay in Mass General Hospital for a "cleanout." This had always been a dirty word for me, as I had managed to put off for a long time what is often a regular treatment option for many CF patients. I usually get by with the oral and nebulizer antibiotics I take all the time at home. But, I agreed to go in for a cleanout, which was initiated with 4 days in the hospital to ensure that the heavy duty doses of IV antibiotics were being administered at the correct levels and weren't having any serious side effects. I continued the IV treatments for a month via a PICC line that was put in so I could administer the drugs from home (or work or wherever). Once through that my lungs seemed to respond really well, and it felt like I had the "reset" button pressed on my health. I had way more energy, enthusiasm, and was able to laugh much harder at my own jokes!
That set the tone for what was to become a great 2008- being able to get out for some spring fishing in MA and Maine, having a wonderful surprise Birthday thrown for me in July (where Chris Trapper performed our wedding song live for us on our front lawn!), taking a once-in-a-lifetime- trip to Alaska (where my beautiful wife Andrea enjoyed the salmon fishing as much as I did!), and finally I am now excited to announce the best news of all: Andrea is pregnant! Unbelievable. Things have gone smoothly thus far and she is about 3 months pregnant right now and due next June.
Sorry for the long intro- but all of this is the set up to say that I have put together what looks to be a great 2008 Holiday cd, and I will be asking for donations again this year to raise money for the Cystic Fibrosis Foundation. I knew I had my work cut out to try and come up with another cd as strong as the "Monkees Christmas Mystery" and Gone Fishin' for Christmas." But after digging in and scouring the internet and getting a lot of good tips from you guys I am proud to present: "It's Christmas Every Day in Alaska!" for 2008. I think this cd might raise the bar! But I'll let you decide.
You can view the album track list and cover art (for this year and years past as well) within the .pdf file attached to this e-mail. The title track from Hank Thompson may just be the only Alaska Christmas song out there - it is the only song that comes up in the Allmusic database that has both "Alaska" and "Christmas" in the title. This year's offering includes tracks from: The Who (live at Leeds in 1970), The Three Stooges, Black Sabbath, Death Cab for Cutie, The Darkness, Peter, Paul and Mary, Alabama, Bing Crosby, Paul McCartney, and more. Chris Trapper appears (courtesy of Starlit Records) in the coveted #24 slot. Chris has written and recorded some great songs on his album "It's Christmastime" (see www.ChrisTrapper.com), and was also generous enough to grant permission for the use of his beautiful song "Thorn Becomes a Rose" on this cd.
Again this year I am asking for a minimum $10 donation if you'd like a cd. All past years of cd's are available as well for donations of $10 per cd. Multiple cd orders are welcomed and encouraged as they make great Christmas gifts and stocking stuffers. I am trying to ramp up production this year a bit so pass the word around to friends, neighbors, coworkers, etc who might be interested.
New this year, I have had some 2009 calendars printed up with some of my nicer photographs that I've taken during my travels matched up to an appropriate month of the year. You can view the pictures I used to make the calendars at: http://picasaweb.google.com/carr24 (click on the 2009 calendar folder). Calendars are available for a $20 donation (While supplies last!).
If you would like to donate but do not want me to send you any homemade treasures- don't worry- I won't be offended!
It's easy to donate- you can donate in person with cash, send me a personal check (made out to me), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/GiftReg/JamieCarr and just click to donate- where we will be building onto last year's total). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. The CF Foundation is simply one of the best run, most efficient, and productive charities you could hope to donate to. You can find out more information about the CF Foundation if you'd like at: http://www.cff.org/aboutCFFoundation/.
If you are still reading… there are two nominees for worst Christmas song I found this year- the first is like having bees crawl in your ears and make it to your brain. It's the Christmas Macarena. Oof. Basically it's the Macarena song with someone saying "Christmas" right before "Macarena." Quite painful. The second falls into the category of so bad, you think it's a joke, or a parody, or you are missing something. But then there's no punchline, and you are just left scratching your head listening to an awful song. That description belongs to Ozzy Osbourne and Jessica Simpson's duet of "Walking in a Winter Wonderland." Amazingly enough there's also a video for this song on Youtube- at first I thought it was a saturday night live skit or something!?
Thank you very much to all of you who have sent me songs, cd's, or suggestions for additions to the annual christmas cd's. It's a big help. Even if your songs are not on this year's cd listen for them in the future. Thanks to: Uncle Big Jim, Alan C, Tony D, Rod L, Art J, Brian F, John F, Jared C, Dave B, Richard C, and others I'm sure I forgot.
Happy Holidays!
Peace, Jamie
2009 fundraising letter
Hello friends,
I hope that this letter finds you well. A lot sure has changed on my end since my letter last December! We sold our house and moved into our new house just a few weeks before we were blessed with our son Wynn, who was born June 8th 2009. I simply can’t overstate how awesome fatherhood is and how much I enjoy being a dad. Wynn is a great baby that eats well, sleeps well, and smiles and giggles often. He will turn 6 months old tomorrow and just started to crawl this morning so now we are in for it! Andrea is a super Mom and we are having fun watching Wynn grow and change on a daily basis.
Things have been dynamic on the short term as well. On December 3rd I began taking a newly developed drug designed to treat the genetic defect in Cystic Fibrosis as part of a phase II clinical trial. Enrolling in a CF clinical trial has been something I have wanted to do for a long time as a way of repaying the benefits I have experienced from treatments that have greatly improved my quality of life. My health has been very good and given the nature of the therapy I decided that I would make time to enroll in this one. On the same day that I started taking the new drug, while I was at the Hospital, I also found out that I was going to be laid off the next day when I went in to work. I was another casualty to the numbers game due to the MA state budget crunch. Bummer. That made for a long day.
I was able to take a walk outside in between the poking and prodding of the trial tests, and sitting on a bench I was able to hold court and chat with some gray squirrels that live in a small green space in downtown Boston. Note: If you would ever like to attract a large amount of squirrels to a close proximity in a short amount of time, simply open up a Nutter Butter and watch them come running! One squirrel in particular decided I was a good enough food prospect that he laid down like a dog about 3 feet from me, pining for a bite of my oversized faux peanut. The consensus from the squirrels was that I should be thankful for what I have, see what comes around the bend in terms of new opportunities, and look at it as an opportunity to spend more time with Wynn for the time being. Now I just have to follow their advice…
In any event, I know what you are all thinking- why are you chatting with squirrels and will my change in employment status, new parent status, and questionable mental health affect a possible 2009 Christmas cd!? ;) Well, the answer is no, other than delaying the release by a few days I am on track to release another cd with a great mix of Holiday tunes. I am happy to report that after sifting through hundreds of duds I feel I have another cd that maintains the quality of the past offerings, and this is another cd that I really like. I hope you will enjoy it as well.
I am trying to bump up production and fundraising a bit this year, and I hope that we will be able to continue increasing the $ raised each year as we have the past two years, so please pass the word around. Of course I also understand that many budgets are being tightened or impacted by the slumping economy. However, each year I have done this my expectations have been surpassed and I have had the rewarding experience of seeing so much good will, generosity, and thoughtfulness that I am really looking forward to the fundraiser as a bright spot this year!
I have put together a website that has a link to the fundraiser, this year’s cover and song list, alternate 2009 cd covers that didn’t make the cut this year, all of the past cd issues, and the past fundraising letters I’ve sent out. Please visit it at: http://cfchristmascds.weebly.com/ I also thought that this might make it easier for folks to pass along info about the fundraiser to others they know, without making everyone read the long sappy letter from a stranger ;).
So once again I’m asking for a $10 donation if you’d like a cd. It’s easy to donate: - you can donate in person with cash, send me a personal check (made out to me made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/GiftReg/JamieCarrREGOTHE09 and just click to donate). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to.
The CF Foundation is simply one of the best run, most efficient, and productive charities you could hope to donate to. There is a match being provided this year by an anonymous donor but it is only for “major gifts” that exceed $10,000. I tried to see if $5k would qualify but no dice! You can find out more information about the CF Foundation if you'd like at: http://www.cff.org/aboutCFFoundation/. More information about CF clinical trials can be found at: http://www.cff.org/research/ClinicalResearch/Find/?IDS=1&SearchAll=1(The trial I am enrolled in is #20).
I’d like to thank Chris Trapper for granting permission this year for the use of his song “It’s Christmas Time.” It’s another track off of his great Christmas cd of the same name. You can visit his website and sign up for his mailing list at: http://www.christrapper.com Also, thanks to those who provided cd's or song suggestions that helped in filling out the 2009 (and future) song lists: Jeff D., Richard C., Rod D., and Uncle Jim.
I hope that this letter finds you well. A lot sure has changed on my end since my letter last December! We sold our house and moved into our new house just a few weeks before we were blessed with our son Wynn, who was born June 8th 2009. I simply can’t overstate how awesome fatherhood is and how much I enjoy being a dad. Wynn is a great baby that eats well, sleeps well, and smiles and giggles often. He will turn 6 months old tomorrow and just started to crawl this morning so now we are in for it! Andrea is a super Mom and we are having fun watching Wynn grow and change on a daily basis.
Things have been dynamic on the short term as well. On December 3rd I began taking a newly developed drug designed to treat the genetic defect in Cystic Fibrosis as part of a phase II clinical trial. Enrolling in a CF clinical trial has been something I have wanted to do for a long time as a way of repaying the benefits I have experienced from treatments that have greatly improved my quality of life. My health has been very good and given the nature of the therapy I decided that I would make time to enroll in this one. On the same day that I started taking the new drug, while I was at the Hospital, I also found out that I was going to be laid off the next day when I went in to work. I was another casualty to the numbers game due to the MA state budget crunch. Bummer. That made for a long day.
I was able to take a walk outside in between the poking and prodding of the trial tests, and sitting on a bench I was able to hold court and chat with some gray squirrels that live in a small green space in downtown Boston. Note: If you would ever like to attract a large amount of squirrels to a close proximity in a short amount of time, simply open up a Nutter Butter and watch them come running! One squirrel in particular decided I was a good enough food prospect that he laid down like a dog about 3 feet from me, pining for a bite of my oversized faux peanut. The consensus from the squirrels was that I should be thankful for what I have, see what comes around the bend in terms of new opportunities, and look at it as an opportunity to spend more time with Wynn for the time being. Now I just have to follow their advice…
In any event, I know what you are all thinking- why are you chatting with squirrels and will my change in employment status, new parent status, and questionable mental health affect a possible 2009 Christmas cd!? ;) Well, the answer is no, other than delaying the release by a few days I am on track to release another cd with a great mix of Holiday tunes. I am happy to report that after sifting through hundreds of duds I feel I have another cd that maintains the quality of the past offerings, and this is another cd that I really like. I hope you will enjoy it as well.
I am trying to bump up production and fundraising a bit this year, and I hope that we will be able to continue increasing the $ raised each year as we have the past two years, so please pass the word around. Of course I also understand that many budgets are being tightened or impacted by the slumping economy. However, each year I have done this my expectations have been surpassed and I have had the rewarding experience of seeing so much good will, generosity, and thoughtfulness that I am really looking forward to the fundraiser as a bright spot this year!
I have put together a website that has a link to the fundraiser, this year’s cover and song list, alternate 2009 cd covers that didn’t make the cut this year, all of the past cd issues, and the past fundraising letters I’ve sent out. Please visit it at: http://cfchristmascds.weebly.com/ I also thought that this might make it easier for folks to pass along info about the fundraiser to others they know, without making everyone read the long sappy letter from a stranger ;).
So once again I’m asking for a $10 donation if you’d like a cd. It’s easy to donate: - you can donate in person with cash, send me a personal check (made out to me made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/GiftReg/JamieCarrREGOTHE09 and just click to donate). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to.
The CF Foundation is simply one of the best run, most efficient, and productive charities you could hope to donate to. There is a match being provided this year by an anonymous donor but it is only for “major gifts” that exceed $10,000. I tried to see if $5k would qualify but no dice! You can find out more information about the CF Foundation if you'd like at: http://www.cff.org/aboutCFFoundation/. More information about CF clinical trials can be found at: http://www.cff.org/research/ClinicalResearch/Find/?IDS=1&SearchAll=1(The trial I am enrolled in is #20).
I’d like to thank Chris Trapper for granting permission this year for the use of his song “It’s Christmas Time.” It’s another track off of his great Christmas cd of the same name. You can visit his website and sign up for his mailing list at: http://www.christrapper.com Also, thanks to those who provided cd's or song suggestions that helped in filling out the 2009 (and future) song lists: Jeff D., Richard C., Rod D., and Uncle Jim.
2010 fundraising letter
_Hello friends,
I hope that this letter finds you well! I seem to be in a good place right now, enjoying fatherhood, feeling pretty well, and working at a new job that I started at during the year.
Wynn is now 1 ½ and he is simply a hoot- and I am smitten as a Dad. I am so thankful for every day I get to spend with him. A few nuggets from my experience as a father: It dawned on me that Wynn’s impression of the appropriate behavior of adult males in our society is to: (in order of importance) 1) Throw balls of many shapes and sizes into the air, bounce them on our forehead, catch them, and then say “Bonk” And 2) Follow our children around talking in a deep voice, spreading our arms wide in a half circle like they were longhorns, making extra loud footfalls, and eventually catching and tickling them until they say “uncle.” I was so proud that I had finally found a single person in the world who really enjoyed my singing. But now he can talk and he'll say "all done" when I'm midsong.... oh man, back down to zero people who enjoy my singing! Also, Wynn is making me proud as quite the little nature boy, as he can identify animal scat in the backyard already: "poops" "deer" "gross" he'll say as we approach a pile of deer dung. I guess the first two he learned from me and the third from his Mom!
The Cystic Fibrosis clinical trial that I was enrolled in at the end of last year did not end well on a personal level as my Doctors removed me from the study after having a fairly serious headache for 3 weeks straight and some curious and acute fatigue. So it was disappointing to go through all of the testing and visits only to not go to the last two scheduled visits. Apparently at the time I was one of only 2 people in the nationwide study who had experienced any problems. I’ll find out later if I was actually on the study drug or a placebo, in which case if it was the placebo I should get a complimentary psychological evaluation…. ;) In general my CF has been pretty manageable; things have been under relative control this year. So I’ll take it! It's hard to put into words how I feel about having Cystic Fibrosis. In general it pretty much sucks. But I can also say that it is a great feeling to feel like you are overly blessed in your life, and you are not yet approaching the end of it.
The layoff period which began at the turn of last year lasted much shorter than expected, about 6 months, and had a better than expected outcome as well! I landed a job as an Aquatic Biologist with the MA Department of Conservation and Recreation. I work mainly on the Wachusett Reservoir and its surrounding watershed monitoring water quality, plankton, and benthic macroinvertebrates (stream bugs) in order to protect and maintain the drinking water quality of the reservoir. So it’s right up my alley. I really like it so far. There is a pair of bald eagles and several pairs of loons that nest on the reservoir- it is the second largest body of water in MA and is completely undeveloped- so it is a beautiful place. Perfect for a cover shot for this year’s Christmas cd and fundraiser….
Of course my parents thought that Wynn should go on the cover again this year- but now that’s we’re at the point where he can actually recognize himself on there I don’t want to go scarring the kid for life just for the sake of his kooky Dad’s holiday cd sales! So I went with the old theme of the goofy and somewhat self deprecating “me at work” shot in the spirit of many of the older albums (and older jobs!). So for 2010 I'm proud to introduce "Working in a Water Wonderland."
The music this year is really solid- I think you'll enjoy it. I've got a mix of mostly new artists and songs that you're not likely to be familiar with already, but are still good tunes that you'll enjoy. One song you will know is "Winter Wonderland", however, it's not a version you've heard before. I painstakingly mixed together 30 different popular artists to make one Winter Wonderland medley...which leads into a contest with some prizes actually worth trying for.
The details of the contest, the prizes available, and details about this years cd, past cd's, total $ raised and more can be found at : http://cfchristmascds.weebly.com So please check out the website. I also thought that the web link might make it easier for folks to pass along info about the fundraiser to others they know, without making everyone read the long letter from a stranger ;).
Once again this year I’m asking for a $10 donation if you’d like a cd. It’s easy to donate: - you can donate in person with cash, send me a personal check (made out to me made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/GiftReg/JamieCarrREGHOLI10 and just click to donate). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to. As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want a cd I don't take offense!
The CF Foundation is simply one of the best run, most efficient, and productive charities you could hope to donate to. You can find out more information about the CF Foundation if you'd like at: http://www.cff.org/aboutCFFoundation/.
I hope that this letter finds you well! I seem to be in a good place right now, enjoying fatherhood, feeling pretty well, and working at a new job that I started at during the year.
Wynn is now 1 ½ and he is simply a hoot- and I am smitten as a Dad. I am so thankful for every day I get to spend with him. A few nuggets from my experience as a father: It dawned on me that Wynn’s impression of the appropriate behavior of adult males in our society is to: (in order of importance) 1) Throw balls of many shapes and sizes into the air, bounce them on our forehead, catch them, and then say “Bonk” And 2) Follow our children around talking in a deep voice, spreading our arms wide in a half circle like they were longhorns, making extra loud footfalls, and eventually catching and tickling them until they say “uncle.” I was so proud that I had finally found a single person in the world who really enjoyed my singing. But now he can talk and he'll say "all done" when I'm midsong.... oh man, back down to zero people who enjoy my singing! Also, Wynn is making me proud as quite the little nature boy, as he can identify animal scat in the backyard already: "poops" "deer" "gross" he'll say as we approach a pile of deer dung. I guess the first two he learned from me and the third from his Mom!
The Cystic Fibrosis clinical trial that I was enrolled in at the end of last year did not end well on a personal level as my Doctors removed me from the study after having a fairly serious headache for 3 weeks straight and some curious and acute fatigue. So it was disappointing to go through all of the testing and visits only to not go to the last two scheduled visits. Apparently at the time I was one of only 2 people in the nationwide study who had experienced any problems. I’ll find out later if I was actually on the study drug or a placebo, in which case if it was the placebo I should get a complimentary psychological evaluation…. ;) In general my CF has been pretty manageable; things have been under relative control this year. So I’ll take it! It's hard to put into words how I feel about having Cystic Fibrosis. In general it pretty much sucks. But I can also say that it is a great feeling to feel like you are overly blessed in your life, and you are not yet approaching the end of it.
The layoff period which began at the turn of last year lasted much shorter than expected, about 6 months, and had a better than expected outcome as well! I landed a job as an Aquatic Biologist with the MA Department of Conservation and Recreation. I work mainly on the Wachusett Reservoir and its surrounding watershed monitoring water quality, plankton, and benthic macroinvertebrates (stream bugs) in order to protect and maintain the drinking water quality of the reservoir. So it’s right up my alley. I really like it so far. There is a pair of bald eagles and several pairs of loons that nest on the reservoir- it is the second largest body of water in MA and is completely undeveloped- so it is a beautiful place. Perfect for a cover shot for this year’s Christmas cd and fundraiser….
Of course my parents thought that Wynn should go on the cover again this year- but now that’s we’re at the point where he can actually recognize himself on there I don’t want to go scarring the kid for life just for the sake of his kooky Dad’s holiday cd sales! So I went with the old theme of the goofy and somewhat self deprecating “me at work” shot in the spirit of many of the older albums (and older jobs!). So for 2010 I'm proud to introduce "Working in a Water Wonderland."
The music this year is really solid- I think you'll enjoy it. I've got a mix of mostly new artists and songs that you're not likely to be familiar with already, but are still good tunes that you'll enjoy. One song you will know is "Winter Wonderland", however, it's not a version you've heard before. I painstakingly mixed together 30 different popular artists to make one Winter Wonderland medley...which leads into a contest with some prizes actually worth trying for.
The details of the contest, the prizes available, and details about this years cd, past cd's, total $ raised and more can be found at : http://cfchristmascds.weebly.com So please check out the website. I also thought that the web link might make it easier for folks to pass along info about the fundraiser to others they know, without making everyone read the long letter from a stranger ;).
Once again this year I’m asking for a $10 donation if you’d like a cd. It’s easy to donate: - you can donate in person with cash, send me a personal check (made out to me made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/GiftReg/JamieCarrREGHOLI10 and just click to donate). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to. As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want a cd I don't take offense!
The CF Foundation is simply one of the best run, most efficient, and productive charities you could hope to donate to. You can find out more information about the CF Foundation if you'd like at: http://www.cff.org/aboutCFFoundation/.
2011 Fundraising Letter
A lot of things have now occurred in my life that I did even dream would come to fruition. A beautiful wife, not one but TWO children of my own, and a rewarding career in the environmental field. Another one is feeling old!
Fact is, now that I am an adult with Cystic Fibrosis it is pretty nice that I’ve been around long enough to start feeling old. When you introduce one of your children to another one of your children, you feel old. When your Friday night plans consist of a knee MRI and you are happy about that, you feel even older. And when there are CF patients who are a decade younger than you who are in need of their second double lung transplant, you feel very old. And very thankful to feel that way.
As with any year that brings in a new family member, things have been busy! The year started off slow for me with an admission to the hospital for an IV antibiotic “cleanout.” It didn’t exactly spruce me up quickly but I did get things rolling enough by the middle of the year to go off on a little solo camping/fly fishing trip to the great woods of Maine in June. Andrea handled 8.75 months of her pregnancy with the energy only an expectant Mom could have (she did finally slow down in the last week!) At the birth we were overjoyed that the surprise we had been waiting on was the girl we both had hoped for. After Brooke’s birth we enjoyed a wonderful few weeks of family time together.
I wasn’t sure if I would have the time or energy to come up with another Holiday cd this year. The fact that I seem to be tiring of the Christmas music scene didn’t help (can we get a law passed with a moratorium on Christmas music on the radio and in stores before Thanksgiving? Geez!) But the 2011 cd is actually slated to be the 10th one I have put together, so that was a bit of extra incentive. I hit upon the idea of a greatest hits type collection to cut down on the amount of time in putting the track list together. I also didn’t want to forgo the CF fundraiser as it is one of the most important things I do each year. This is an exciting time for CF research as well as this year saw a fantastic advancement in the treatment of CF. A new medication, Kalydeco (VX-770), has been submitted for FDA approval and has been successful in treating the underlying cause of CF in clinical trials for patients with the G551D mutation. Though this is a small percentage of CF patients (~4%), the treatment method holds great promise because pairing that medication with other related drugs (like VX-890 and others) currently in the development pipeline could greatly improve the quality of life for the majority of CF patients.
So for 2011 I present: Carr's Christmas Compendium. A Compendium is a "brief summary of a larger work", so that along with the fact that it began with C and would provide an alliterative title it won out over "collectanea" ;). Sure they are all cd's, but I felt the timing was right to attempt to summarize the first nine years of compact discs into one disc that really is compact! As a “greatest hits” type of cd things are decidedly less new, less edgy, less refreshing than I usually aim for. But I still hope you might find it decidedly less mundane, less boring, less annoying than your average holiday playlist. Early reviews are positive- especially on the “oldies but goodies.”
Once again this year I’m asking for a $10 donation if you’d like a cd. It’s easy to donate: - you can donate in person with cash, send me a personal check (made out to me made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/LWC/JamieCarr and just click to donate). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want a cd I don't take offense!
The cover shot (my son and daughter are featured this year) and track list for this year’s cd, past cd's, current fundraising totals ($24,838 for 2007- 2010!) and more can be found at: http://cfchristmascds.weebly.com. So please check out the website. The web link might also make it easier for folks to pass along info about the fundraiser to others they know, without making everyone read the long letter from a stranger ;).
Best wishes for a happy holiday season to you and your family.
Jamie Carr
P.S.
The CF Foundation is simply one of the best run, most efficient, and productive charities you could hope to donate to. You can find out more information about the CF Foundation if you'd like at: http://www.cff.org/aboutCFFoundation/.
I appreciate the kindness of musician Chris Trapper in providing gratis use of one of my absolute favorite Holiday songs: “Thorn Becomes a Rose.” Check out his website and sign up for his email list (bottom right of the front page). I think you'll find that his solo cd's and Christmas album will be great additions to your music collection. I highly recommend checking out one of his live shows if he's in your area!
Fact is, now that I am an adult with Cystic Fibrosis it is pretty nice that I’ve been around long enough to start feeling old. When you introduce one of your children to another one of your children, you feel old. When your Friday night plans consist of a knee MRI and you are happy about that, you feel even older. And when there are CF patients who are a decade younger than you who are in need of their second double lung transplant, you feel very old. And very thankful to feel that way.
As with any year that brings in a new family member, things have been busy! The year started off slow for me with an admission to the hospital for an IV antibiotic “cleanout.” It didn’t exactly spruce me up quickly but I did get things rolling enough by the middle of the year to go off on a little solo camping/fly fishing trip to the great woods of Maine in June. Andrea handled 8.75 months of her pregnancy with the energy only an expectant Mom could have (she did finally slow down in the last week!) At the birth we were overjoyed that the surprise we had been waiting on was the girl we both had hoped for. After Brooke’s birth we enjoyed a wonderful few weeks of family time together.
I wasn’t sure if I would have the time or energy to come up with another Holiday cd this year. The fact that I seem to be tiring of the Christmas music scene didn’t help (can we get a law passed with a moratorium on Christmas music on the radio and in stores before Thanksgiving? Geez!) But the 2011 cd is actually slated to be the 10th one I have put together, so that was a bit of extra incentive. I hit upon the idea of a greatest hits type collection to cut down on the amount of time in putting the track list together. I also didn’t want to forgo the CF fundraiser as it is one of the most important things I do each year. This is an exciting time for CF research as well as this year saw a fantastic advancement in the treatment of CF. A new medication, Kalydeco (VX-770), has been submitted for FDA approval and has been successful in treating the underlying cause of CF in clinical trials for patients with the G551D mutation. Though this is a small percentage of CF patients (~4%), the treatment method holds great promise because pairing that medication with other related drugs (like VX-890 and others) currently in the development pipeline could greatly improve the quality of life for the majority of CF patients.
So for 2011 I present: Carr's Christmas Compendium. A Compendium is a "brief summary of a larger work", so that along with the fact that it began with C and would provide an alliterative title it won out over "collectanea" ;). Sure they are all cd's, but I felt the timing was right to attempt to summarize the first nine years of compact discs into one disc that really is compact! As a “greatest hits” type of cd things are decidedly less new, less edgy, less refreshing than I usually aim for. But I still hope you might find it decidedly less mundane, less boring, less annoying than your average holiday playlist. Early reviews are positive- especially on the “oldies but goodies.”
Once again this year I’m asking for a $10 donation if you’d like a cd. It’s easy to donate: - you can donate in person with cash, send me a personal check (made out to me made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/LWC/JamieCarr and just click to donate). All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want a cd I don't take offense!
The cover shot (my son and daughter are featured this year) and track list for this year’s cd, past cd's, current fundraising totals ($24,838 for 2007- 2010!) and more can be found at: http://cfchristmascds.weebly.com. So please check out the website. The web link might also make it easier for folks to pass along info about the fundraiser to others they know, without making everyone read the long letter from a stranger ;).
Best wishes for a happy holiday season to you and your family.
Jamie Carr
P.S.
The CF Foundation is simply one of the best run, most efficient, and productive charities you could hope to donate to. You can find out more information about the CF Foundation if you'd like at: http://www.cff.org/aboutCFFoundation/.
I appreciate the kindness of musician Chris Trapper in providing gratis use of one of my absolute favorite Holiday songs: “Thorn Becomes a Rose.” Check out his website and sign up for his email list (bottom right of the front page). I think you'll find that his solo cd's and Christmas album will be great additions to your music collection. I highly recommend checking out one of his live shows if he's in your area!
2012 cd fundraising letter
OK, let me say right up front: there's no new Christmas CD this year. Phew, got that out of the way. It's a simple sentence to write and a simple enough concept, but because the CF fundraiser that I run each December is one of the highlights of the year for me, it is disappointing for me to not have a new cd ready for the first time in a decade. How could this come to pass!?
Well, first there's the whole issue of time. Things are just very busy with two little ones. My time is spent cutting apples, making sippy cups or funny faces to the point where it is difficult to carve out time to shower. But you can't smell through email (yet) so you can see why the hygiene loses out... I have never been good at accepting limitations but time constraints are simply becoming a reality nowadays such that not everything can get done. For example, staying in touch with friends and family like you! Or having a month and a half to sift through a couple thousand Christmas tunes. I also just had microfracture surgery on my knee so the whole crutches thing for the next 6 weeks is a factor also. As a result I have plenty of time this weekend to sit down and write this email.
Second, I have to admit to experiencing that throw up in my mouth sensation when I heard Christmas music when I ran into Walmart to pick up some diapers and wipes on November 5th! Ack! Of course I had already been starting to listen to some Holiday songs on my own by then but that just seemed to take the wind out of my sails. No telling yet if this is going to be permanent, but I will say that this same sentiment is what gave rise to me creating my own Christmas cd back in 2002. I have to say the early November Christmas displays, Christmas music and stores being open until midnight on Thanksgiving all felt like a plot on behalf of the retail world to railroad Thanksgiving this year in order to make a few more bucks. I suppose they feel that their bottom lines are not bolstered by Holidays such as Thanksgiving where people that gather together to give thanks for the blessings in their life, great and small.
My third, and my most successful rationalization, is that I don't think anyone out there on this email list will be left wanting for Christmas music! No audio cupboards should be bare as even if I was your only source for Holiday tunes then you have 10 years of cd's and roughly 240 songs to usher you through your Holiday season. If you don't have that many, then perhaps you might consider getting one of the older back issues that you might be missing. If you have a particular year that you like feel free to let me know so that you'll have one you can pass along to friends or family as a gift. Of course some folks may be relieved- "You mean I get to donate and don't have to pretend I like a Christmas cd this year? Sign me up!" ;)
In that vein I have decided to try and run the fundraiser without the usual new cd to send out to thank you for your donation. I can offer any of the older back issues that you might not have yet to any donors this year (you can check the list of 2002-2011 cd's here) But it is possible that though the cd is a fun part of all this and a great way for me to say thank you for your kindness, having a one year hiccup won't totally put the brakes on your collective support.
So with that in mind I am going to ask that you consider continuing to show your support for the Cystic Fibrosis Foundation this Holiday season. 2012 has been a terrific year in CF Research with several exciting announcements on a couple of fronts. I really feel the need to call attention to this as this is what the end result of our fundraising is working towards and how it can make a difference. Earlier this year the FDA approved a new drug called Kalydeco™for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease. Building directly on that landmark advancement, results from a Phase 2 trial of Kalydeco in combination with a drug called VX-809 show a significant improvement in lung function in people with two copies of the most common CF mutation like myself, Delta F508. This combination therapy would treat the majority of patients with CF, and has the potential to make significant gains in life expectancy and the quality of life for those patients. The CF Foundation is working to advance treatment therapies in these areas of CF defect therapy, but they are also working on developing new treatments to improve nutrition, anti-infection and anti-inflammatory medications all at the same time in order to increase the chances that a mulitiple treatments used together can improve the health and life expectancy of people with CF.
It’s easy to donate: - you can donate in person with cash, send me a personal check (made out to me made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/LWC/JamieCarr20863and just click to donate). If you would like a copy of any of the older cd's I’m asking for a $10 donation for each cd you'd like. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
The current fundraising total ($30,484 for 2007- 2011!) past cd pictures and track lists, old annual letters and more can be found at: http://cfchristmascds.weebly.com. So please check out the website. The web link might also make it easier for folks to pass along info about the fundraiser to others they know, without making everyone read the long letter from a stranger ;).
Since I don't talk to people as often as I used to here's the annual update portion of this letter that I usually work in: Our family is doing well. Andrea is an amazing Mom who is the engine that keeps our family running. Wynn is in preschool now and growing like a weed. He and I have a blast tickling and wrestling with each other and playing games. He is a nice big brother for Brooke, who I would politely call a spirited young girl! When she is not shaking her head no to any of my requests, she is a cutie and gives good hugs. Being a Dad is an amazing adventure. Young children serve as great reminders to try and keep life more simple, more silly, and to take time out to enjoy small things.
My CF care team has been great this year, and they have helped me keep my head above water while working, doing all my treatments and helping out with the kids. I was able to avoid going into the hospital for a cleanout this year, which is a nice goal to meet. I did have a bum knee for the past year, and that has greatly limited my aerobic exercise. One byproduct of that has been a continued decrease in my lung function tests; hopefully with this recent knee surgery I can get back to being able to exercise and attempt to slow that negative trend.
Best wishes for a happy and healthy holiday season to you and your family.
2013 cd fundraising letter
I hope that this letter finds you well, and perhaps it will find you with a few minutes to read through my annual ramblings ;)
2013 was a bit of an odd year with some ups and downs. The year got off to a cranky start with me not feeling well and hobbling around on crutches with my bum knee trying to keep up with my two young rascals. That led right into a hospital admission for an IV antibiotic cleanout in February, when I consented to get "cleaned out" before I was 100% "wiped out." The second half of the year has been much more up than down health wise and the downs have not been too bad or too long. I think I owe a lot of my health to my amazing wife Andrea- perhaps that is the most important health factor that keeps me doing well and makes my CF care team scratch their heads ;) Feeling better and my improving knee allows me to tickle, cherish, chastise and even chase the children almost every evening. In July, I watched firsthand as my friend, colleague and boss Dave Worden lost a bravely fought 18 month battle with brain cancer. He and I were the two Aquatic Biologists on staff at the reservoir. Dave was a terrific person and an extremely tough individual who did not complain a single time throughout his illness and chose to work right up until the end of his time. I won't flatter myself by saying I was a lot like Dave, but we did have a lot in common and I will say he was someone who a lot of us, including myself, could hope to be like.
As someone who is now an adult with Cystic Fibrosis and who feels like I have already lived a lifetime, I think about my own mortality a fair amount. Dave's passing made those feelings even more acute for me. Losing someone close to us really hammers home how we need to make the most of every day, treat others as well as we can, spend quality time with family, work towards our dreams, and keep a positive outlook about what we can do with tomorrow if we are lucky enough to be here for it. "Adding tomorrows every day" is the core mission of the Cystic Fibrosis Foundation, and they are living up to it. They are on the brink of some amazing things as they have multiple novel drug therapies designed to target the genetic defect in the majority of CF patients (like me) in the advances stages of clinical trials: The FDA recently awarded a “Breakthrough Therapy Designation” to Kalydeco and VX-809. This new designation is intended to speed the development of select potential therapies that treat life-threatening diseases or conditions. They are not putting all of their eggs in one basket, however, as they are developing therapies for all aspects of the disease. If you have a minute check out their impressive drug development pipeline. For example, an inhaled antibiotic I take 6 months out of the year is now available as a powder type inhaler (TOBI inhaled powder on the pipeline) instead of an aerosolized nebulizer. This may seem like a small change, but the newer treatment works a lot better for me and also saves an hour a day in treatment time and cleaning time. That's equivalent to more than one full day a month that I am now not sucking on a nebulizer. What could you do with an extra day a month?! I can spend that time doing other things like taking the kids outside or hunting down Christmas songs from the Netherlands!
Speaking of Christmas songs, taking a year off has resulted in a spectacular offering of Holiday tunes for 2013: "Slide Into Christmas." I should take a year off every year. Oh wait...
Anyway, there are two ways to look at this year's cd. One is that is a great collection of music. The extra time means that the songs are more likely to be tracks you have never heard before, but are of sufficient quality that you will want to hear them again and again. You'll be hard pressed to resist moving and grooving to Laura Vane, Matisyahu, and Rufus Thomas. The Vanishers and Fitz and the Tantrums will help you hook up at the bar after Santa steals your lady. The final track also features cameo singing debuts of a a couple of people from the Carr household... (Have no fears it is not me!) Wynn turned 4 this summer and Brooke just turned 2. They are both happy healthy kids that are doing great. The other, perhaps more important way to view this year's cd once you start to get familiar with it as a bit of a narrative. Taking a line from the first song, middle song, and the last song (no, really!):
Another year has come and passed, Maybe we all grow up too fast
May the lord be good to you, with every rising sun
All through the day, have a smile for every one
All I want for Christmas Is to give my love away
OK, so I've taken it a bit far and included something akin to poetry in this year's email. I must have snapped during that recent New England cold snap! Or perhaps the kids are making me sappy ;)
Once again I am asking for a donation to the CF Foundation if you'd like a cd. Through the extreme generosity of people like yourself we have raised $35,054 since 2007-enough to truly make a difference! Let's keep it going! It’s easy to donate: Just go to my page on the CF website: http://www.cff.org/LWC/JamieCarr24104. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a $10 donation for each cd you'd like. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
You can preview this year's cd, "Slide Into Christmas," see the up to date fundraising totals, see past cd pictures and track lists, and find old annual letters at my website: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know. If you enjoy the cd then give me some feedback and let me know which songs are your favorite! Don't delay on your cd orders this year as prolific singer/songwriter Chris Trapper and the award winning and talented Kristen Cifelli have given permission to use their songs and they will be putting out an announcement for me on their social media, so I am hoping to sell out all of the 2013 cd's I make.
Have a great Holiday season! -Jamie
Well, first there's the whole issue of time. Things are just very busy with two little ones. My time is spent cutting apples, making sippy cups or funny faces to the point where it is difficult to carve out time to shower. But you can't smell through email (yet) so you can see why the hygiene loses out... I have never been good at accepting limitations but time constraints are simply becoming a reality nowadays such that not everything can get done. For example, staying in touch with friends and family like you! Or having a month and a half to sift through a couple thousand Christmas tunes. I also just had microfracture surgery on my knee so the whole crutches thing for the next 6 weeks is a factor also. As a result I have plenty of time this weekend to sit down and write this email.
Second, I have to admit to experiencing that throw up in my mouth sensation when I heard Christmas music when I ran into Walmart to pick up some diapers and wipes on November 5th! Ack! Of course I had already been starting to listen to some Holiday songs on my own by then but that just seemed to take the wind out of my sails. No telling yet if this is going to be permanent, but I will say that this same sentiment is what gave rise to me creating my own Christmas cd back in 2002. I have to say the early November Christmas displays, Christmas music and stores being open until midnight on Thanksgiving all felt like a plot on behalf of the retail world to railroad Thanksgiving this year in order to make a few more bucks. I suppose they feel that their bottom lines are not bolstered by Holidays such as Thanksgiving where people that gather together to give thanks for the blessings in their life, great and small.
My third, and my most successful rationalization, is that I don't think anyone out there on this email list will be left wanting for Christmas music! No audio cupboards should be bare as even if I was your only source for Holiday tunes then you have 10 years of cd's and roughly 240 songs to usher you through your Holiday season. If you don't have that many, then perhaps you might consider getting one of the older back issues that you might be missing. If you have a particular year that you like feel free to let me know so that you'll have one you can pass along to friends or family as a gift. Of course some folks may be relieved- "You mean I get to donate and don't have to pretend I like a Christmas cd this year? Sign me up!" ;)
In that vein I have decided to try and run the fundraiser without the usual new cd to send out to thank you for your donation. I can offer any of the older back issues that you might not have yet to any donors this year (you can check the list of 2002-2011 cd's here) But it is possible that though the cd is a fun part of all this and a great way for me to say thank you for your kindness, having a one year hiccup won't totally put the brakes on your collective support.
So with that in mind I am going to ask that you consider continuing to show your support for the Cystic Fibrosis Foundation this Holiday season. 2012 has been a terrific year in CF Research with several exciting announcements on a couple of fronts. I really feel the need to call attention to this as this is what the end result of our fundraising is working towards and how it can make a difference. Earlier this year the FDA approved a new drug called Kalydeco™for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease. Building directly on that landmark advancement, results from a Phase 2 trial of Kalydeco in combination with a drug called VX-809 show a significant improvement in lung function in people with two copies of the most common CF mutation like myself, Delta F508. This combination therapy would treat the majority of patients with CF, and has the potential to make significant gains in life expectancy and the quality of life for those patients. The CF Foundation is working to advance treatment therapies in these areas of CF defect therapy, but they are also working on developing new treatments to improve nutrition, anti-infection and anti-inflammatory medications all at the same time in order to increase the chances that a mulitiple treatments used together can improve the health and life expectancy of people with CF.
It’s easy to donate: - you can donate in person with cash, send me a personal check (made out to me made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), pay me via paypal (to [email protected]), or better still pay with a credit card online at the CF website (go to http://www.cff.org/LWC/JamieCarr20863and just click to donate). If you would like a copy of any of the older cd's I’m asking for a $10 donation for each cd you'd like. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
The current fundraising total ($30,484 for 2007- 2011!) past cd pictures and track lists, old annual letters and more can be found at: http://cfchristmascds.weebly.com. So please check out the website. The web link might also make it easier for folks to pass along info about the fundraiser to others they know, without making everyone read the long letter from a stranger ;).
Since I don't talk to people as often as I used to here's the annual update portion of this letter that I usually work in: Our family is doing well. Andrea is an amazing Mom who is the engine that keeps our family running. Wynn is in preschool now and growing like a weed. He and I have a blast tickling and wrestling with each other and playing games. He is a nice big brother for Brooke, who I would politely call a spirited young girl! When she is not shaking her head no to any of my requests, she is a cutie and gives good hugs. Being a Dad is an amazing adventure. Young children serve as great reminders to try and keep life more simple, more silly, and to take time out to enjoy small things.
My CF care team has been great this year, and they have helped me keep my head above water while working, doing all my treatments and helping out with the kids. I was able to avoid going into the hospital for a cleanout this year, which is a nice goal to meet. I did have a bum knee for the past year, and that has greatly limited my aerobic exercise. One byproduct of that has been a continued decrease in my lung function tests; hopefully with this recent knee surgery I can get back to being able to exercise and attempt to slow that negative trend.
Best wishes for a happy and healthy holiday season to you and your family.
2013 cd fundraising letter
I hope that this letter finds you well, and perhaps it will find you with a few minutes to read through my annual ramblings ;)
2013 was a bit of an odd year with some ups and downs. The year got off to a cranky start with me not feeling well and hobbling around on crutches with my bum knee trying to keep up with my two young rascals. That led right into a hospital admission for an IV antibiotic cleanout in February, when I consented to get "cleaned out" before I was 100% "wiped out." The second half of the year has been much more up than down health wise and the downs have not been too bad or too long. I think I owe a lot of my health to my amazing wife Andrea- perhaps that is the most important health factor that keeps me doing well and makes my CF care team scratch their heads ;) Feeling better and my improving knee allows me to tickle, cherish, chastise and even chase the children almost every evening. In July, I watched firsthand as my friend, colleague and boss Dave Worden lost a bravely fought 18 month battle with brain cancer. He and I were the two Aquatic Biologists on staff at the reservoir. Dave was a terrific person and an extremely tough individual who did not complain a single time throughout his illness and chose to work right up until the end of his time. I won't flatter myself by saying I was a lot like Dave, but we did have a lot in common and I will say he was someone who a lot of us, including myself, could hope to be like.
As someone who is now an adult with Cystic Fibrosis and who feels like I have already lived a lifetime, I think about my own mortality a fair amount. Dave's passing made those feelings even more acute for me. Losing someone close to us really hammers home how we need to make the most of every day, treat others as well as we can, spend quality time with family, work towards our dreams, and keep a positive outlook about what we can do with tomorrow if we are lucky enough to be here for it. "Adding tomorrows every day" is the core mission of the Cystic Fibrosis Foundation, and they are living up to it. They are on the brink of some amazing things as they have multiple novel drug therapies designed to target the genetic defect in the majority of CF patients (like me) in the advances stages of clinical trials: The FDA recently awarded a “Breakthrough Therapy Designation” to Kalydeco and VX-809. This new designation is intended to speed the development of select potential therapies that treat life-threatening diseases or conditions. They are not putting all of their eggs in one basket, however, as they are developing therapies for all aspects of the disease. If you have a minute check out their impressive drug development pipeline. For example, an inhaled antibiotic I take 6 months out of the year is now available as a powder type inhaler (TOBI inhaled powder on the pipeline) instead of an aerosolized nebulizer. This may seem like a small change, but the newer treatment works a lot better for me and also saves an hour a day in treatment time and cleaning time. That's equivalent to more than one full day a month that I am now not sucking on a nebulizer. What could you do with an extra day a month?! I can spend that time doing other things like taking the kids outside or hunting down Christmas songs from the Netherlands!
Speaking of Christmas songs, taking a year off has resulted in a spectacular offering of Holiday tunes for 2013: "Slide Into Christmas." I should take a year off every year. Oh wait...
Anyway, there are two ways to look at this year's cd. One is that is a great collection of music. The extra time means that the songs are more likely to be tracks you have never heard before, but are of sufficient quality that you will want to hear them again and again. You'll be hard pressed to resist moving and grooving to Laura Vane, Matisyahu, and Rufus Thomas. The Vanishers and Fitz and the Tantrums will help you hook up at the bar after Santa steals your lady. The final track also features cameo singing debuts of a a couple of people from the Carr household... (Have no fears it is not me!) Wynn turned 4 this summer and Brooke just turned 2. They are both happy healthy kids that are doing great. The other, perhaps more important way to view this year's cd once you start to get familiar with it as a bit of a narrative. Taking a line from the first song, middle song, and the last song (no, really!):
Another year has come and passed, Maybe we all grow up too fast
May the lord be good to you, with every rising sun
All through the day, have a smile for every one
All I want for Christmas Is to give my love away
OK, so I've taken it a bit far and included something akin to poetry in this year's email. I must have snapped during that recent New England cold snap! Or perhaps the kids are making me sappy ;)
Once again I am asking for a donation to the CF Foundation if you'd like a cd. Through the extreme generosity of people like yourself we have raised $35,054 since 2007-enough to truly make a difference! Let's keep it going! It’s easy to donate: Just go to my page on the CF website: http://www.cff.org/LWC/JamieCarr24104. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a $10 donation for each cd you'd like. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
You can preview this year's cd, "Slide Into Christmas," see the up to date fundraising totals, see past cd pictures and track lists, and find old annual letters at my website: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know. If you enjoy the cd then give me some feedback and let me know which songs are your favorite! Don't delay on your cd orders this year as prolific singer/songwriter Chris Trapper and the award winning and talented Kristen Cifelli have given permission to use their songs and they will be putting out an announcement for me on their social media, so I am hoping to sell out all of the 2013 cd's I make.
Have a great Holiday season! -Jamie
2014 Letter:
Hello friends, I hope that this letter finds you well.
As we head towards the tail end of 2014, I have been pondering a few things. First, what is the opposite of “tail end”? Head end? Front end? Tail beginning? Regardless of phrase, I hope the early part of 2014 treated you well. I am writing this year’s letter from Mass General Hospital, for two reasons: One, while I am in for a few days I actually had some time on my hands to write out this letter. Two, I figured it would garner more sympathy and draw more donations! Joking, joking.
I was admitted for 4 days to start an IV antibiotic “cleanout,” which is effectively getting dosed with the right mix of antibiotics so that the persistent lung infection that has progressively worsened over the past few months is “cleaned out” as much as possible without overtaxing my kidneys. This year I came in for my cleanout before having been very ill for an extended period, and it may be paying off as it looks like that may help me to take an even higher dose of medicines than I have previously. My hope is that will help me to stay healthier over the winter. I hope to be off of the IV by December 8th. The trick with antibiotics is bacterial resistance, and I have always felt like every course of antibiotics takes another bullet out of the chamber in terms of making it less effective for the next time.
However, my thinking is starting to shift a bit on this, due to the amazing progress that has been made in the discovery of brand new therapies for CF treatment. The CF foundation has done an amazing job getting new treatments into the drug development pipeline. You might recall that a huge breakthrough was made with a new treatment called Kalydeco that treats the basic CF defect on the cellular level. However, that treatment was effective for only a small number of CF patients with a specific mutation. A new drug combination designed for the most common CF mutation showed significant improvement in lung function in phase 3 clinical trials. This is the last phase of clinical trials and just a few weeks ago Vertex submitted a New Drug Application in the U.S. and Europe for the approval of Lumacaftor in combination with Ivacaftor for people with CF like myself who have two copies of the most common F508del mutation!
This is very exciting news, and it gives me that much more motivation to try my best to stop my slow and steady decrease in lung function, and hope that additional help may be on the way. I know every person has obstacles to face. Some are small and some are large, and each of us deals with them differently. Dealing with a chronic illness is a great challenge, as there are no breaks. No TV timeouts. No breathers. CF is a unique challenge in many ways, but each of us encounters difficulties in our lives. Whatever it might be, the question is, how do you deal with it? Do you let it hold you back, or do you use it as motivation to make your accomplishments feel that much better when you achieve them? I have a new thought that I try to refer to when I am too tired, too busy, or too lazy to do something: Am I going to make excuses not to do something, or am I going to make an excuse to get something done? So far I am not regretting trying my hardest to do the latter.
This Fall has been tough as our family has been dealing with the loss of my Uncle Dave, who at 55 lost a battle with colon cancer earlier this November. Dave was that father figure type of Uncle in many ways to me, and I learned a lot from him. He had fun right up until the end of his life: after he was unable to speak and was immobile in bed he had my Mom in hysterics as he “lip synced” his daughter Riley’s singing lessons! He would take time out to pull off of the road and observe a particularly beautiful tree in full Fall display, and he could quickly make new friends in new places such that it added an element of excitement to any trip. He was spontaneous, and he would never hesitate to tell friend, foe or stranger that they had food on their face.
Dave was a great Dad and that makes me try to cherish the time I get to spend with my own children that much more. Wynn is loving kindergarten, Brooke is in preschool, and they are growing up unbelievably fast. We had a ball this summer. On one particular Saturday morning when I had the kids to myself, I asked them what they wanted to do that day. "I want to go fishing" Brooke said excitedly. "Hey that was my idea" Wynn chimed in. We walked down to the lake and fished for several hours, with the kids only whining when I said we had to go home to eat! Incorporating the kids into new fishing adventures and spending time outdoors together- now that makes me happy inside. Andrea is transitioning to a new position as the optometrist at a large community Health Center. She is, as always, the engine that drives our family, keeping me and the kids healthy with all of her fun cooking.
You may notice that the kids have helped me with the 2014 cd: "Frozen Over!" as evidenced by the album cover as well as track #15 "Jingle Bells, Batman Smells" (currently their favorite song). This year's cd has made us all smile and I hope it does the same for you. Tatiana Manois does not have the grammy awards that Nora Jones does, but I give you 5 to 1 odds that you are seeking out this young teenager’s song “Spend Christmas with You” over Norah’s duet. It’s fun to juxtapose Tatiana’s song with the next track, Lowell Fulson’s similarly titled 1967 45 LP single release of "I Wanna Spend Christmas With You." The rest of the cd is a bit more modern than usual, and not quite as traditional. It’s also a little bit more mellow, perhaps reflecting my increasingly grey hair (courtesy of Brooke!). But Dragonette, the Smoking Flowers, and Anthony Hamilton will make sure you are grooving if you are trimming the tree to this cd.
Once again I am asking for a donation to the CF Foundation if you'd like a cd. Through the extreme generosity of people like yourself we have raised over $41,000 since 2007-enough to truly make a difference! Let's keep it going! It’s easy to donate: Just go to my page on the CF website and click to donate. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a $10 donation for each cd you'd like. Some cd's from past years may be available but might be limited in supply. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
You can preview this year's cd, see the up to date fundraising totals, see past cd pictures and track lists, view more funny shots from the Frozen photo shoot, and find old annual letters at my website: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know. If you enjoy the cd then give me some feedback and let me know which songs are your favorite!
I'll finish this letter the same way Relient K wraps up the cd: “Merry Christmas, Here’s to Many More”
Hello friends, I hope that this letter finds you well.
As we head towards the tail end of 2014, I have been pondering a few things. First, what is the opposite of “tail end”? Head end? Front end? Tail beginning? Regardless of phrase, I hope the early part of 2014 treated you well. I am writing this year’s letter from Mass General Hospital, for two reasons: One, while I am in for a few days I actually had some time on my hands to write out this letter. Two, I figured it would garner more sympathy and draw more donations! Joking, joking.
I was admitted for 4 days to start an IV antibiotic “cleanout,” which is effectively getting dosed with the right mix of antibiotics so that the persistent lung infection that has progressively worsened over the past few months is “cleaned out” as much as possible without overtaxing my kidneys. This year I came in for my cleanout before having been very ill for an extended period, and it may be paying off as it looks like that may help me to take an even higher dose of medicines than I have previously. My hope is that will help me to stay healthier over the winter. I hope to be off of the IV by December 8th. The trick with antibiotics is bacterial resistance, and I have always felt like every course of antibiotics takes another bullet out of the chamber in terms of making it less effective for the next time.
However, my thinking is starting to shift a bit on this, due to the amazing progress that has been made in the discovery of brand new therapies for CF treatment. The CF foundation has done an amazing job getting new treatments into the drug development pipeline. You might recall that a huge breakthrough was made with a new treatment called Kalydeco that treats the basic CF defect on the cellular level. However, that treatment was effective for only a small number of CF patients with a specific mutation. A new drug combination designed for the most common CF mutation showed significant improvement in lung function in phase 3 clinical trials. This is the last phase of clinical trials and just a few weeks ago Vertex submitted a New Drug Application in the U.S. and Europe for the approval of Lumacaftor in combination with Ivacaftor for people with CF like myself who have two copies of the most common F508del mutation!
This is very exciting news, and it gives me that much more motivation to try my best to stop my slow and steady decrease in lung function, and hope that additional help may be on the way. I know every person has obstacles to face. Some are small and some are large, and each of us deals with them differently. Dealing with a chronic illness is a great challenge, as there are no breaks. No TV timeouts. No breathers. CF is a unique challenge in many ways, but each of us encounters difficulties in our lives. Whatever it might be, the question is, how do you deal with it? Do you let it hold you back, or do you use it as motivation to make your accomplishments feel that much better when you achieve them? I have a new thought that I try to refer to when I am too tired, too busy, or too lazy to do something: Am I going to make excuses not to do something, or am I going to make an excuse to get something done? So far I am not regretting trying my hardest to do the latter.
This Fall has been tough as our family has been dealing with the loss of my Uncle Dave, who at 55 lost a battle with colon cancer earlier this November. Dave was that father figure type of Uncle in many ways to me, and I learned a lot from him. He had fun right up until the end of his life: after he was unable to speak and was immobile in bed he had my Mom in hysterics as he “lip synced” his daughter Riley’s singing lessons! He would take time out to pull off of the road and observe a particularly beautiful tree in full Fall display, and he could quickly make new friends in new places such that it added an element of excitement to any trip. He was spontaneous, and he would never hesitate to tell friend, foe or stranger that they had food on their face.
Dave was a great Dad and that makes me try to cherish the time I get to spend with my own children that much more. Wynn is loving kindergarten, Brooke is in preschool, and they are growing up unbelievably fast. We had a ball this summer. On one particular Saturday morning when I had the kids to myself, I asked them what they wanted to do that day. "I want to go fishing" Brooke said excitedly. "Hey that was my idea" Wynn chimed in. We walked down to the lake and fished for several hours, with the kids only whining when I said we had to go home to eat! Incorporating the kids into new fishing adventures and spending time outdoors together- now that makes me happy inside. Andrea is transitioning to a new position as the optometrist at a large community Health Center. She is, as always, the engine that drives our family, keeping me and the kids healthy with all of her fun cooking.
You may notice that the kids have helped me with the 2014 cd: "Frozen Over!" as evidenced by the album cover as well as track #15 "Jingle Bells, Batman Smells" (currently their favorite song). This year's cd has made us all smile and I hope it does the same for you. Tatiana Manois does not have the grammy awards that Nora Jones does, but I give you 5 to 1 odds that you are seeking out this young teenager’s song “Spend Christmas with You” over Norah’s duet. It’s fun to juxtapose Tatiana’s song with the next track, Lowell Fulson’s similarly titled 1967 45 LP single release of "I Wanna Spend Christmas With You." The rest of the cd is a bit more modern than usual, and not quite as traditional. It’s also a little bit more mellow, perhaps reflecting my increasingly grey hair (courtesy of Brooke!). But Dragonette, the Smoking Flowers, and Anthony Hamilton will make sure you are grooving if you are trimming the tree to this cd.
Once again I am asking for a donation to the CF Foundation if you'd like a cd. Through the extreme generosity of people like yourself we have raised over $41,000 since 2007-enough to truly make a difference! Let's keep it going! It’s easy to donate: Just go to my page on the CF website and click to donate. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a $10 donation for each cd you'd like. Some cd's from past years may be available but might be limited in supply. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
You can preview this year's cd, see the up to date fundraising totals, see past cd pictures and track lists, view more funny shots from the Frozen photo shoot, and find old annual letters at my website: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know. If you enjoy the cd then give me some feedback and let me know which songs are your favorite!
I'll finish this letter the same way Relient K wraps up the cd: “Merry Christmas, Here’s to Many More”
2015 Letter:
Hello friends, I hope that this letter finds you well.
Another year has passed, and there is much to be thankful for. First, I am here to write a long winded letter in my now annual tradition, and you are here to receive it, or perhaps even read it, or at the very least possibly skim the novel parts. So that’s a solid start! Second, I am nowhere near the hospital this year, and for that I am very thankful. It took a few months for last year’s cleanout to have the impact I was hoping for, which was a bit depressing. But by the Springtime I was in good form and I have mostly been on a roll for the past few months. I had a great stretch of consuming life with zest this fall and I have to say I have been quite enjoying it! The benefit to you is that I am less sappy than in other years and you are spared any of my urges to attempt (or plagiarize) any poetry. At this point, I am becoming rather like an elephant that has received an extra set of teeth after living out a normal life span and wearing through the 6 sets it is born with! (Animal physiology sidebar: as it happens, when an elephant’s 6th set of molars wear out they are no longer able to eat and thus wither away. Older elephants realize this and seek out soft foods to help them squeeze as much time out of their last round of teeth as they can.) The comparisons continue as I also have a unique nose, a long memory, have been known to visit “watering holes” and my upkeep costs a lot ;)
Speaking of big news, and heavy topics, you may recall my email from this past summer or you may have seen the news coverage regarding the FDA’s approval of the landmark medication Orkambi. These developments are important to the medical industry, to the CF foundation’s efforts, many CF patients, and me. This treatment is designed for the specific mutation that I possess. I am inching closer to taking this medication, as at this point I have a prescription for it. Bloodwork and other requirements are mostly in place, and pending submission of additional paperwork by medical staff, insurance coverage looks promising. So it may be possible that I will receive a nice Christmas present this year… I have to say, I was pretty moved by the response to my email this summer, and the suggestions/offers/ideas to start crowdsourcing some type of funding if this medication was not covered by health insurance. I was not sure how to respond to that, but I’m pretty sure I wouldn’t feel right about it given the expense and for now, let’s just hope the issue doesn’t even come up again.
My family is my greatest accomplishment. It feels like the kids are getting so old so fast, Wynn is now 6 and Brooke is 4. Here are a few pictures of what we've been up to in 2015. They are great kids, and they appear to be thriving and doing well. Wynn and I had a nice camping and fly fishing trip when I picked him up after his last day of kindergarten in June and we camped out for a few nights and fished some nice small streams in Western MA. He caught some nice trout on a fly rod, I caught his excitement about catching tadpoles with our hands from the river, and it was a highlight of the year. Brooke is a cute little dynamo and she is a juggernaut at playing crazy 8’s. I planned out a much deserved and relaxing tropical vacation for Andrea in March in the Bahamas. It was our first real vacation sans kids, and it was nice to reconnect and realize that we still do enjoy each other’s company outside of the bustle of family life. That put me in her good graces for the rest of the year!
Anyway, let’s make like Paul Simon and start “Getting Ready for Christmas Day” with some good music! Come party with Ween, get rockin’, shake it up, enjoy some Hanukkah Lovin’ and since these are mostly songs you have not heard before, once you give it a few spins I hope you’ll enjoy “The Best Christmas Ever.” I guarantee you won’t be left deflated by the 2015 cd: “Christmas Dynasty.” This year’s cover features a picture of me and my Uncle Dave Mello hanging out on a Saturday afternoon. People keep saying we look like a pair of famous people, but I don’t know about that. Must be just coincidence. See what you think. I have to give a big thanks to my dad Jim Carr and Chris McCawley, people who are far smarter than me, who split the cost of a cd duplicator and donated it to make the cd production phase of this fundraiser easy instead of arduous. It is making things go so much smoother this year. Thanks very much!
Once again I am asking for a donation to the CF Foundation if you'd like a cd. Through the extreme generosity of people like yourself we have raised over $50,000 since 2007: enough to truly make a difference! Let's keep it going! It’s easy to donate: Just go to my page on the CF website and click to donate. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. Some cd's from past years may be available but might be limited in supply. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
You can preview this year's cd, see the up to date fundraising totals, see past cd pictures and track lists, view more funny shots from the cd cover photo shoot, and find old annual letters at my website: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know. If you enjoy the cd then give me some feedback and let me know which songs are your favorite!
Merry Christmas, Here’s to Many More!
Jamie
Hello friends, I hope that this letter finds you well.
Another year has passed, and there is much to be thankful for. First, I am here to write a long winded letter in my now annual tradition, and you are here to receive it, or perhaps even read it, or at the very least possibly skim the novel parts. So that’s a solid start! Second, I am nowhere near the hospital this year, and for that I am very thankful. It took a few months for last year’s cleanout to have the impact I was hoping for, which was a bit depressing. But by the Springtime I was in good form and I have mostly been on a roll for the past few months. I had a great stretch of consuming life with zest this fall and I have to say I have been quite enjoying it! The benefit to you is that I am less sappy than in other years and you are spared any of my urges to attempt (or plagiarize) any poetry. At this point, I am becoming rather like an elephant that has received an extra set of teeth after living out a normal life span and wearing through the 6 sets it is born with! (Animal physiology sidebar: as it happens, when an elephant’s 6th set of molars wear out they are no longer able to eat and thus wither away. Older elephants realize this and seek out soft foods to help them squeeze as much time out of their last round of teeth as they can.) The comparisons continue as I also have a unique nose, a long memory, have been known to visit “watering holes” and my upkeep costs a lot ;)
Speaking of big news, and heavy topics, you may recall my email from this past summer or you may have seen the news coverage regarding the FDA’s approval of the landmark medication Orkambi. These developments are important to the medical industry, to the CF foundation’s efforts, many CF patients, and me. This treatment is designed for the specific mutation that I possess. I am inching closer to taking this medication, as at this point I have a prescription for it. Bloodwork and other requirements are mostly in place, and pending submission of additional paperwork by medical staff, insurance coverage looks promising. So it may be possible that I will receive a nice Christmas present this year… I have to say, I was pretty moved by the response to my email this summer, and the suggestions/offers/ideas to start crowdsourcing some type of funding if this medication was not covered by health insurance. I was not sure how to respond to that, but I’m pretty sure I wouldn’t feel right about it given the expense and for now, let’s just hope the issue doesn’t even come up again.
My family is my greatest accomplishment. It feels like the kids are getting so old so fast, Wynn is now 6 and Brooke is 4. Here are a few pictures of what we've been up to in 2015. They are great kids, and they appear to be thriving and doing well. Wynn and I had a nice camping and fly fishing trip when I picked him up after his last day of kindergarten in June and we camped out for a few nights and fished some nice small streams in Western MA. He caught some nice trout on a fly rod, I caught his excitement about catching tadpoles with our hands from the river, and it was a highlight of the year. Brooke is a cute little dynamo and she is a juggernaut at playing crazy 8’s. I planned out a much deserved and relaxing tropical vacation for Andrea in March in the Bahamas. It was our first real vacation sans kids, and it was nice to reconnect and realize that we still do enjoy each other’s company outside of the bustle of family life. That put me in her good graces for the rest of the year!
Anyway, let’s make like Paul Simon and start “Getting Ready for Christmas Day” with some good music! Come party with Ween, get rockin’, shake it up, enjoy some Hanukkah Lovin’ and since these are mostly songs you have not heard before, once you give it a few spins I hope you’ll enjoy “The Best Christmas Ever.” I guarantee you won’t be left deflated by the 2015 cd: “Christmas Dynasty.” This year’s cover features a picture of me and my Uncle Dave Mello hanging out on a Saturday afternoon. People keep saying we look like a pair of famous people, but I don’t know about that. Must be just coincidence. See what you think. I have to give a big thanks to my dad Jim Carr and Chris McCawley, people who are far smarter than me, who split the cost of a cd duplicator and donated it to make the cd production phase of this fundraiser easy instead of arduous. It is making things go so much smoother this year. Thanks very much!
Once again I am asking for a donation to the CF Foundation if you'd like a cd. Through the extreme generosity of people like yourself we have raised over $50,000 since 2007: enough to truly make a difference! Let's keep it going! It’s easy to donate: Just go to my page on the CF website and click to donate. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. Some cd's from past years may be available but might be limited in supply. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
You can preview this year's cd, see the up to date fundraising totals, see past cd pictures and track lists, view more funny shots from the cd cover photo shoot, and find old annual letters at my website: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know. If you enjoy the cd then give me some feedback and let me know which songs are your favorite!
Merry Christmas, Here’s to Many More!
Jamie
2016 Letter:
Hello friends, I hope that this letter finds you well.
This is the year that we have been working towards for many years. As I mentioned back in January, I was able to start Orkambi, which is the newest medicine targeted specifically for CF patients with the most common CF mutation. As a result, 2016 was the healthiest year I have had in quite some time. I got one set of pulmonary function lung tests that were the best results I have had since 2011! That is pretty amazing! I can definitely feel a real difference, and mentally and physically a little bit of the burden has been taken off of me and the family. Brooke has not been saying “I hope you feel better Daddy” when I tuck her in at night like she was on too many nights last year. This is not to say it has all been smooth sailing this year, and I still have to consume or inhale a large grocery bag worth of meds each month. The treatments have also made me less funny. Ok, that was a joke, but see what I mean? Not as funny as usual. I also used the fewest sick days this year since 2010 as well- and no hospital, so that is great by me. Woo-hoo!
The CF Foundation is not stopping with Orkambi by any means, as they have seized upon its effectiveness to continue their work at the front line of precision medical research with the development of so many other new medicines in their amazing drug development pipeline. In short, every day I take one of the purple, two of the blue, two of the orange, and one of the green drugs they have successfully developed. So I am living proof of their success.
Even President Obama covered the progress made in treating CF in his state of the union address in January. It was pretty amazing to hear him address CF specifically. He talked specifically about Bill Elder Jr. Like me, Bill is a CF patient who is thriving in adulthood. However, unlike me, Bill is described by the president as a “good looking young guy.” I’m old now ;) The president went on to say: “The patients with us this morning are living proof that the dawn of a new era has arrived…One day Bill will be able to tell his grandchildren about how he used the miracle of his own life to not only serve as an example, but also an inspiration…And that’s the spirit of hope, and resilience, and community that’s always carried America forward. And we may disagree sometimes, especially here in Washington, but we do share a common vision for our future. That’s who we are as Americans, and that’s the power of scientific discovery. And we want Bill’s generation, and the generations that come after, to inherit that most extraordinary gift anybody can imagine, and that is not just a chance to live a long, and happy, and healthy life in this greatest country on Earth, but also the chance to remake that world continuously, in ways that provide great promise for future generations.”
I think that those are things that, no matter our political affiliation, we can all support. Even if things are looking bleak, or the adversity appears too great, or we are dealt a bad hand, we can use a positive outlook and determination to make a positive impact on our own lives and those around us. Even if the improvement realized is marginal, even if the end result seems hopeless, even if things seemed doomed, wouldn’t you rather reach the end knowing that you did your best and it’s not your fault things went awry? How else would you want the foosball game to end? I was talking about foosball, what were you thinking about? I stopped talking about politics a while back. Geez.
Just to make sure that this is a "bi-partisan letter" and I don’t catch any flak, were you aware that Donald Trump donated $40,000 to a CF patient and his wife in 2013 as they awaited a lung transplant? I know that billionaires can’t quite make the same financial impact that we do with our Christmas cd project here, but that’s still pretty neat!
Things are going great with the family. The kids are growing so fast and I get to lose to them at all kinds of different board games now. Losing that third time in a row in Monopoly can take your self-esteem down a notch or two. I was able to volunteer to be the assistant coach for Wynn’s soccer team this year, which was a lot of fun. We all got in some fishing this year as well, and Brooke wanted to have her birthday party as a fishing trip, so needless to say I was happy to oblige that! Wynn’s fly fishing exploits (on his own) make me more proud than I can describe. I don’t know how Andrea keeps our household running so smoothly, but it lets me goof off with the kids and be a big kid myself. They are still young enough where the eye rolling is not a constant…yet!
The kids helped a bit with this year's cd: “Little Snow Girl,” and it is already both kid, parent, and grandparent approved! The theme of enjoying Christmas and the holidays and having as much fun as we did when we were kids is woven throughout. It features a sweet Chuck Berry tune and Run Run Rudolph, but that tune is played by the Grateful Dead ;) Robert Plant, Mike Love (of the Beach boys) and Patty Smyth make sure you know this is not a kid’s cd, though. My favorite song here is Von Grey's "Cozy Tranquility." Paul Gary contributes the title track from his terrific 1964 Christmas album. Check out David Wesley's Youtube video for his recording of O Come O Come Emmanuel. A one man a capella band? That is cool!
Once again I am asking for a donation to the CF Foundation if you'd like a Christmas cd. Through the extreme generosity of people like yourself we have raised over $58,000 since 2007: enough to truly make a difference! Let's keep it going! It’s easy to donate: Just go to my page on the CF website and click to donate. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. Some cd's from past years may be available but might be limited in supply. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
You can preview this year's cd cover art, see the up to date fundraising totals, see past cd pictures and track lists, view more funny shots from the cd cover photo shoot, and find old annual letters at my website: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know. If you enjoy the cd then give me some feedback and let me know which songs are your favorite! Also, I have created a Spotify playlist of this year’s cd so if you are on Spotify and want to “play” the songs that way drop me an email and I can try to share it to your Spotify account.
We are all blessed to see Christmas one more time!
Be well, Jamie
Hello friends, I hope that this letter finds you well.
This is the year that we have been working towards for many years. As I mentioned back in January, I was able to start Orkambi, which is the newest medicine targeted specifically for CF patients with the most common CF mutation. As a result, 2016 was the healthiest year I have had in quite some time. I got one set of pulmonary function lung tests that were the best results I have had since 2011! That is pretty amazing! I can definitely feel a real difference, and mentally and physically a little bit of the burden has been taken off of me and the family. Brooke has not been saying “I hope you feel better Daddy” when I tuck her in at night like she was on too many nights last year. This is not to say it has all been smooth sailing this year, and I still have to consume or inhale a large grocery bag worth of meds each month. The treatments have also made me less funny. Ok, that was a joke, but see what I mean? Not as funny as usual. I also used the fewest sick days this year since 2010 as well- and no hospital, so that is great by me. Woo-hoo!
The CF Foundation is not stopping with Orkambi by any means, as they have seized upon its effectiveness to continue their work at the front line of precision medical research with the development of so many other new medicines in their amazing drug development pipeline. In short, every day I take one of the purple, two of the blue, two of the orange, and one of the green drugs they have successfully developed. So I am living proof of their success.
Even President Obama covered the progress made in treating CF in his state of the union address in January. It was pretty amazing to hear him address CF specifically. He talked specifically about Bill Elder Jr. Like me, Bill is a CF patient who is thriving in adulthood. However, unlike me, Bill is described by the president as a “good looking young guy.” I’m old now ;) The president went on to say: “The patients with us this morning are living proof that the dawn of a new era has arrived…One day Bill will be able to tell his grandchildren about how he used the miracle of his own life to not only serve as an example, but also an inspiration…And that’s the spirit of hope, and resilience, and community that’s always carried America forward. And we may disagree sometimes, especially here in Washington, but we do share a common vision for our future. That’s who we are as Americans, and that’s the power of scientific discovery. And we want Bill’s generation, and the generations that come after, to inherit that most extraordinary gift anybody can imagine, and that is not just a chance to live a long, and happy, and healthy life in this greatest country on Earth, but also the chance to remake that world continuously, in ways that provide great promise for future generations.”
I think that those are things that, no matter our political affiliation, we can all support. Even if things are looking bleak, or the adversity appears too great, or we are dealt a bad hand, we can use a positive outlook and determination to make a positive impact on our own lives and those around us. Even if the improvement realized is marginal, even if the end result seems hopeless, even if things seemed doomed, wouldn’t you rather reach the end knowing that you did your best and it’s not your fault things went awry? How else would you want the foosball game to end? I was talking about foosball, what were you thinking about? I stopped talking about politics a while back. Geez.
Just to make sure that this is a "bi-partisan letter" and I don’t catch any flak, were you aware that Donald Trump donated $40,000 to a CF patient and his wife in 2013 as they awaited a lung transplant? I know that billionaires can’t quite make the same financial impact that we do with our Christmas cd project here, but that’s still pretty neat!
Things are going great with the family. The kids are growing so fast and I get to lose to them at all kinds of different board games now. Losing that third time in a row in Monopoly can take your self-esteem down a notch or two. I was able to volunteer to be the assistant coach for Wynn’s soccer team this year, which was a lot of fun. We all got in some fishing this year as well, and Brooke wanted to have her birthday party as a fishing trip, so needless to say I was happy to oblige that! Wynn’s fly fishing exploits (on his own) make me more proud than I can describe. I don’t know how Andrea keeps our household running so smoothly, but it lets me goof off with the kids and be a big kid myself. They are still young enough where the eye rolling is not a constant…yet!
The kids helped a bit with this year's cd: “Little Snow Girl,” and it is already both kid, parent, and grandparent approved! The theme of enjoying Christmas and the holidays and having as much fun as we did when we were kids is woven throughout. It features a sweet Chuck Berry tune and Run Run Rudolph, but that tune is played by the Grateful Dead ;) Robert Plant, Mike Love (of the Beach boys) and Patty Smyth make sure you know this is not a kid’s cd, though. My favorite song here is Von Grey's "Cozy Tranquility." Paul Gary contributes the title track from his terrific 1964 Christmas album. Check out David Wesley's Youtube video for his recording of O Come O Come Emmanuel. A one man a capella band? That is cool!
Once again I am asking for a donation to the CF Foundation if you'd like a Christmas cd. Through the extreme generosity of people like yourself we have raised over $58,000 since 2007: enough to truly make a difference! Let's keep it going! It’s easy to donate: Just go to my page on the CF website and click to donate. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. Some cd's from past years may be available but might be limited in supply. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
You can preview this year's cd cover art, see the up to date fundraising totals, see past cd pictures and track lists, view more funny shots from the cd cover photo shoot, and find old annual letters at my website: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know. If you enjoy the cd then give me some feedback and let me know which songs are your favorite! Also, I have created a Spotify playlist of this year’s cd so if you are on Spotify and want to “play” the songs that way drop me an email and I can try to share it to your Spotify account.
We are all blessed to see Christmas one more time!
Be well, Jamie
2017 Fundraising letter
Hello friends, I hope that this letter finds you well! I am happy to report that, thanks to your input, the 2017 cd is now complete. I must say I wasn't sure how this would go, but the quality, variety, and passion for your favorite holiday songs was awesome! Thanks to everyone that nominated songs and also to everyone who voted. Congratulations if your nomination was voted on, as you are credited in the song track list.
How will it compare to past years' cds? Well, that will be up to you to judge. The actual voting results, and the final track list are now posted on my website, so feel free to check them out. With 2 exceptions, songs with more than 25% of the vote made it onto the cd. You can make what you wish of the recent news coverage of the 2017 cd...
All right, enough shenanigans. The cd cover this year is a picture I took of the aurora borealis, also known as the northern lights. They were amazing to behold! The colors in the sky danced, undulated, pulsated, waxed and waned and during the 1-2 minute peak they were completely mind blowing. They were like nothing I had ever seen before.
Where did I see the northern lights? Good question. You might recall that I love fly fishing, and you may or may not know that in my eyes there is no more beautiful fish than a wild brook trout. Since before having kids I have been scheming and dreaming of going to Labrador to chase huge brook trout in that vast wilderness. Within a month of starting Orkambi in January 2015, I was plotting again. I asked Andrea to accompany me on a great adventure and we booked the trip for August 2017. Pretty much all of my life decisions are health related. At that point the trip to Labrador was planned as something I was determined to do before I was so sick that I couldn't do it. However, with the progress in my health due to the new medication Orkambi, the trip turned into a celebration of the absence of many of the physical restrictions that I had become used to.
A special pair of Labrador Brook Trout
Click here to see more photos from our Labrador adventure
Andrea and I drove 1,000 miles north from MA across Quebec to Labrador City, and then took a float plane 125 miles north to McKenzie River Lodge. There was, literally, no other human presence within a 20 mile radius of the fishing camp. Pavement and cell service were farther away than the width of Massachusetts. The brook trout we caught were well earned, but they were breathtaking and rewarded us with beauty as rare as the glimpse of the aurora. Another benefit was that my parents watched the kids for us on our trip, and they all had a ball together! The kids are in on the fishing act too, I snuck in a few photos of Brooke and Wynn at the end of the photo album.
The cover for the cd this year is a photo mosaic of Labrador northern lights taken from the lodge. The composite image is made up of over 1,500 of our pictures taken in Labrador, to represent the contributions of individuals combining to make something on a much larger scale. I thought it was a fitting tribute to the crowd sourced nature of the cd this year, and for the fundraiser as a whole. I was also shooting for a "Starry Night" painting vibe. Vincent Van Gogh once wrote to his brother "Always continue walking a lot and loving nature, for that’s the real way to learn to understand art better and better."
Aurora borealis over Andre Lake, Labrador
Despite a positive impact for me personally so far, drugs like Orkambi are not the end of the line by any means. In fact quite the opposite, as the CF Foundation is building on its effectiveness to continue their work at the front line of precision medical research. There is a diverse array of drugs being developed to address and correct the genetic defect in CF patients. Take a look at their amazing drug development pipeline. I am living proof (I currently take 1 of the purple meds, 2 greens, 2 oranges, and a blue from that pipeline) of their success but there are many more patients to help and the knowledge being gained in CF genetics research has implications for many more genetic diseases and patients. Each year this fundraiser contributes to this progress.
The family all helped out for a cd making party!
There have been enough tragedies, natural disasters, and world events during 2017 so far that there are sources of stress seemingly at every turn. I am not sure about much lately. So I try to keep it simple. Humor is better than insult. It is always appropriate to be polite. It is exceedingly rare to regret being generous. In that spirit the fundraiser has become an annual tradition and will humbly roll on for another year with some songs and a few jokes!
So I ask for a donation to the CF Foundation if you'd like a Christmas cd. Through the extreme generosity of people like yourself we have raised over $65,000 since 2007: enough to truly make a difference! Let's keep it going!
It’s easy to donate: Just go to my page on the CF website and click to donate. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
The up to date fundraising totals and more information about the fundraiser and more info can be found at: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know.
We are all blessed to see Christmas one more time.
Be well and be as happy as you can!
-Jamie
2018 Fundraising Letter
Hello, I hope that this letter finds you well!
(If you are new to this list, welcome, and here is the backstory)
I have often thought that travelling by ski or by skate on the blank slate of a frozen lake is a metaphor for life in its simplest form. Wide uninterrupted views of nearly flat terrain should make it easy to figure out where you're going, right? It turns out that there are obstacles camouflaged in the monochrome surroundings, blending in until you step in or on them. The snow can get sticky and grab your skis. Even when your path and goal seem to be laid out in front of you, when you turn around it is obvious that you did not travel in a straight line to get there.
Of course, navigating through real life is more like hiking through forested hills, valleys and mountains where you cannot see what is coming up next. I use winter outings on the ice as a reminder that, even under ideal conditions, there is still a constant need to refine goals and find the new "best way" forward based on whatever obstacles end up in the way.
Hello, I hope that this letter finds you well!
(If you are new to this list, welcome, and here is the backstory)
I have often thought that travelling by ski or by skate on the blank slate of a frozen lake is a metaphor for life in its simplest form. Wide uninterrupted views of nearly flat terrain should make it easy to figure out where you're going, right? It turns out that there are obstacles camouflaged in the monochrome surroundings, blending in until you step in or on them. The snow can get sticky and grab your skis. Even when your path and goal seem to be laid out in front of you, when you turn around it is obvious that you did not travel in a straight line to get there.
Of course, navigating through real life is more like hiking through forested hills, valleys and mountains where you cannot see what is coming up next. I use winter outings on the ice as a reminder that, even under ideal conditions, there is still a constant need to refine goals and find the new "best way" forward based on whatever obstacles end up in the way.
Three things happened in 2018 that I would not have anticipated: First, I turned 40! It may not sound like all that big of an accomplishment, I mean, everyone my age is doing it. But, it was something that was a bit hard for me to integrate this year. Turning 40, and suddenly being healthy, made me second guess decisions in my life that suddenly felt short sighted and conservative now that I was middle age and had not done them. To continue the analogy from above, it turns out those decisions were only natural given that I thought my frozen lake was a pretty small. I turned into a cove and it has opened up lot more area that I can't wait to explore. I am pleased about that!
The next two things came about as a result of feeling more healthy and making a concerted effort to extend myself in new directions. The first was a commitment to work on my writing (something some of the folks on this email list have encouraged me to do- thank you!). I started contributing regularly to a fly fishing blog, which has been fun and has led to meeting some great people. I also got a piece published in a major fly fishing magazine called The Drake, which made the children laugh when I ran around like a crazy person after I found that issue in the mailbox.
Finally, a professional opportunity presented itself and I ended up moving up into a management position within MA DCR, which meant leaving a dream job as an Aquatic Biologist. It's a big change. With only a week under my belt, time will tell how it works out, but things are off to a good start.
My small personal accomplishments have only been made possible by the far reaching achievements of the Cystic Fibrosis Foundation. CFF continues to build on work at the front line of precision medical research. News broke just last week that a new triple combination therapy trial produced lung function increases in the double digits for two different groups of CF patients. This latest research takes the new combination therapies like Orkambi, that has worked so well for me, and adds a third compound that makes the faulty chloride channel get closer to working normally. I am proud that this annual fundraiser contributes to this progress.
So as I find myself at an inflection point in my life, ripe with uncertainty and full of complexity, I felt drawn to a cd cover that would be the simplest yet. I am happy to announce that the 2018 holiday cd and fundraiser are up and running for 2018 with Tracks in the Snow. Once again I ask for a donation to the CF Foundation if you'd like a Christmas cd. Through the extreme generosity of people like yourself we have raised over $74,000 since 2007: enough to truly make a difference! Let's keep it going!
It’s easy to donate: Just go to my page on the CF website and click to donate. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
The up to date fundraising totals and more information about the fundraiser and more info can be found at: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know.
We are all blessed to see Christmas one more time.
Keep on rockin'!
-Jamie
The next two things came about as a result of feeling more healthy and making a concerted effort to extend myself in new directions. The first was a commitment to work on my writing (something some of the folks on this email list have encouraged me to do- thank you!). I started contributing regularly to a fly fishing blog, which has been fun and has led to meeting some great people. I also got a piece published in a major fly fishing magazine called The Drake, which made the children laugh when I ran around like a crazy person after I found that issue in the mailbox.
Finally, a professional opportunity presented itself and I ended up moving up into a management position within MA DCR, which meant leaving a dream job as an Aquatic Biologist. It's a big change. With only a week under my belt, time will tell how it works out, but things are off to a good start.
My small personal accomplishments have only been made possible by the far reaching achievements of the Cystic Fibrosis Foundation. CFF continues to build on work at the front line of precision medical research. News broke just last week that a new triple combination therapy trial produced lung function increases in the double digits for two different groups of CF patients. This latest research takes the new combination therapies like Orkambi, that has worked so well for me, and adds a third compound that makes the faulty chloride channel get closer to working normally. I am proud that this annual fundraiser contributes to this progress.
So as I find myself at an inflection point in my life, ripe with uncertainty and full of complexity, I felt drawn to a cd cover that would be the simplest yet. I am happy to announce that the 2018 holiday cd and fundraiser are up and running for 2018 with Tracks in the Snow. Once again I ask for a donation to the CF Foundation if you'd like a Christmas cd. Through the extreme generosity of people like yourself we have raised over $74,000 since 2007: enough to truly make a difference! Let's keep it going!
It’s easy to donate: Just go to my page on the CF website and click to donate. You can also donate in person with cash, send me a personal check (made out to me, Jamie Carr at 154 Hosley Road, Gardner MA 01440), or pay me via paypal (to [email protected]). If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. All of the money I personally collect will be donated in a lump sum through the CF website before the end of the year. If you do donate through the website just please be sure to also drop me an email to make sure I know which cd(s) you'd like and what address to send them to (as the site keeps everything but your name private). As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense!
The up to date fundraising totals and more information about the fundraiser and more info can be found at: http://cfchristmascds.weebly.com. So check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know.
We are all blessed to see Christmas one more time.
Keep on rockin'!
-Jamie
2019 Fundraising Letter
Hello, I hope that this letter finds you well after having enjoyed a nice Thanksgiving.
I am thankful for all of the thoughtful people on this mailing list, many of whom reached out about the great news announced by the Cystic Fibrosis Foundation regarding the FDA’s approval of the new drug Trikafta. The faster-than-fast-track approval seemed to stem from the remarkable clinical results of 10% improvement in lung function seen in cystic fibrosis patients taking the drug. “This is a moment to celebrate and to reflect on how working together, we have effectively transformed a genetic disease in a single generation, making CF the greatest story in medicine,” said Dr. Michael Boyle of CFF. This new triple combination therapy is amazing news for CF patients and the CF community. This drug is a credit to the CF Foundation’s vision and branching out into innovative research partnerships.
Thankfully, I am a candidate for this medication. The Mass General Adult CF Program plans to move many patients to Trikafta as quickly as possible, prioritizing the patients most in need. I am thankful I am not at the top of the list, but the first half of 2020 is a realistic timeline. 2019 has been a bit of a mixed bag with some ups and downs. I have accumulated a lot of antibiotic resistance so medications that used to really help are no longer a viable option. If Trikafta can bump up my lung function a bit and help me avoid events like the 6 days at Mass General this spring my reserved optimism will blossom very quickly.
The cover for this year’s Holiday CD is a powerful visual representation of cystic fibrosis. This original artwork was created by a talented and inspirational woman with CF named Ella Balasa. Ella is already on Trikafta, and she expresses what her experience is like with remarkable clarity. The lungs, live growth, decaying branches, and blooming roses symbolize different aspects of cystic fibrosis, which she calls “the greatest blessing and the greatest curse in my life, which affects me daily yet provides the most inspiration.”
For my part, the biggest inspiration in my life has remained family. I owe a big thanks to my son Wynn this year for being the wing man on finding songs for this year’s album. We were like the two old guys in the Muppets, Statler and Waldorf, belittling song after song that we played for each other. Songs would only make it a few seconds before a comment like “I only have two thumbs, otherwise I would give three thumbs down” or “That wasn’t half bad. It was all bad!” would move us along to the next song.
Hello, I hope that this letter finds you well after having enjoyed a nice Thanksgiving.
I am thankful for all of the thoughtful people on this mailing list, many of whom reached out about the great news announced by the Cystic Fibrosis Foundation regarding the FDA’s approval of the new drug Trikafta. The faster-than-fast-track approval seemed to stem from the remarkable clinical results of 10% improvement in lung function seen in cystic fibrosis patients taking the drug. “This is a moment to celebrate and to reflect on how working together, we have effectively transformed a genetic disease in a single generation, making CF the greatest story in medicine,” said Dr. Michael Boyle of CFF. This new triple combination therapy is amazing news for CF patients and the CF community. This drug is a credit to the CF Foundation’s vision and branching out into innovative research partnerships.
Thankfully, I am a candidate for this medication. The Mass General Adult CF Program plans to move many patients to Trikafta as quickly as possible, prioritizing the patients most in need. I am thankful I am not at the top of the list, but the first half of 2020 is a realistic timeline. 2019 has been a bit of a mixed bag with some ups and downs. I have accumulated a lot of antibiotic resistance so medications that used to really help are no longer a viable option. If Trikafta can bump up my lung function a bit and help me avoid events like the 6 days at Mass General this spring my reserved optimism will blossom very quickly.
The cover for this year’s Holiday CD is a powerful visual representation of cystic fibrosis. This original artwork was created by a talented and inspirational woman with CF named Ella Balasa. Ella is already on Trikafta, and she expresses what her experience is like with remarkable clarity. The lungs, live growth, decaying branches, and blooming roses symbolize different aspects of cystic fibrosis, which she calls “the greatest blessing and the greatest curse in my life, which affects me daily yet provides the most inspiration.”
For my part, the biggest inspiration in my life has remained family. I owe a big thanks to my son Wynn this year for being the wing man on finding songs for this year’s album. We were like the two old guys in the Muppets, Statler and Waldorf, belittling song after song that we played for each other. Songs would only make it a few seconds before a comment like “I only have two thumbs, otherwise I would give three thumbs down” or “That wasn’t half bad. It was all bad!” would move us along to the next song.
My daughter Brooke is now eight years old, and she can alternate between melting my heart and battling me. The toughest part of parenting is that she recognizes this and enjoys it! I love spending time with her chatting about horses or walking to the lake together. I wouldn't have imagined that I could braid my own crown from fresh picked flowers, but Brooke used a lot of patience to teach me how. We have a ball when we fish together and she may be the prettiest fly caster in the family.
The 2019 cd “Lo, How a Rose E’er Blooming” begins and ends with family, as Wynn kept grinding and discovered a song that became track 1 on this year’s effort. Sister Hazel asks: can't we all just get along? which feels like a reasonable question at this time. Capital Lights bring us a new favorite: “His Favorite Christmas Story,” while I think I could tolerate “Christmas in Prison” if John Prine were my cellmate. Foy Vance (of Slade) lets us know how it would feel to be tortured annually by a holiday standard that features yourself on the vocal! The last track brings us to the Chad Mitchell Trio describing “The Marvelous Toy,” a song my grandfather would play and sing on his guitar just up until the time I was old enough to take such a memory with me.
I was able to add some new memories this year, as two roses bloomed for me with fishing trips. After a voicemail message that started with “I know this is a shot in the dark…” less than two weeks later I embarked on a second trip of a lifetime to Labrador. It was an amazing experience, and completely different from the previous one. I was healthy for a planned September trip to the Gaspe peninsula in Quebec with my wife Andrea, which is a destination we fell in love with. We were hosted by friends who reside within the bucolic landscape between the mountains and the ocean. We made even more new friends during the trip, although we met very few of the Atlantic salmon we were seeking. We spent blissful days gazing into a crystal clear emerald green river, and rekindled our marriage walking together all alone on a beach below rocky cliffs.
Trikafta is a big step that may help many CF patients, but it is not a cure and it does not address all the CF causing mutations. By using the knowledge and approach gained in the journey to create this drug, the path has been laid to help all CF patients.
Once again I ask for a donation to the CF Foundation if you'd like a Christmas cd this year. Through the extreme generosity of people like yourself we have raised over $82,000 since 2007: enough to truly make a difference! Let's keep it going!
It’s easy to contribute: Just go to my event page on the CF website and click to donate. If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense.
Fore details, other ways to donate, or to follow along with the totals check out my website: http://cfchristmascds.weebly.com. It's OK to share the fundraiser with others, but at this time I prefer that people do not post the fundraiser on facebook or other social media.
Henry David Thoreau wrote in a letter "I am grateful for what I am and have. My Thanksgiving is perpetual... My wealth is not possession but enjoyment." You might try using the word e'er instead of ever a few times in 2020, for your own enjoyment.
Cheers, Jamie
Once again I ask for a donation to the CF Foundation if you'd like a Christmas cd this year. Through the extreme generosity of people like yourself we have raised over $82,000 since 2007: enough to truly make a difference! Let's keep it going!
It’s easy to contribute: Just go to my event page on the CF website and click to donate. If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I don't take offense.
Fore details, other ways to donate, or to follow along with the totals check out my website: http://cfchristmascds.weebly.com. It's OK to share the fundraiser with others, but at this time I prefer that people do not post the fundraiser on facebook or other social media.
Henry David Thoreau wrote in a letter "I am grateful for what I am and have. My Thanksgiving is perpetual... My wealth is not possession but enjoyment." You might try using the word e'er instead of ever a few times in 2020, for your own enjoyment.
Cheers, Jamie
2020 Fundraising Letter
Hello, I hope that this letter finds you well, and that you and your family are weathering the pandemic as well as can be expected.
This year has certainly been one filled with anxiety. At times it has felt like riding on the “Yankee Cannonball” roller coaster at Canobie Lake Park, a timber beast built in the 1930’s. The rickety ride instilled a fear that you could be flung off at any point. The hills would give you a weightless feeling, momentarily removing your connection to normal life and leaving you disoriented. I’ve had notions of taking the kids someday, but they just made it through 2020 so I think that can be considered close enough.
At the outset of the pandemic when this novel virus emerged and began to punish people’s pulmonary function, I appreciated that so many people thought of my lungs. Like other CF patients I have been social distancing, washing hands, and worrying about germs for quite a while. The normal protocols in place for a visit to the CF center at Mass. General look pretty much like what the new COVID-19 protocols look like when they show an Emergency Room on the evening news.
The news across the board has been pretty tough this year. As of even just a week ago, I could not get any momentum for putting together a Holiday cd. I did not seem to have enough mental bandwidth to accommodate screening dud Holiday songs without turning into The Grinch. I credit my son Wynn and his persistence, as after sending me four or five stinkers he suddenly came up with about ten songs that merited a listen. Two all-nighters later and boom, we had the foundation for a 2020 album.
I am hopeful that this year’s cd “The 2020 Experience” helps you enjoy the 2020 holiday season and retain some hope for moving on into 2021. It’s tough to argue when Ben Gibbard points out “People have a way of acting crazy, when they think they’ll be dead in a month.” That line helps me empathize with people and all of the stresses they are under lately. Robbie Williams opens his track “Can’t Stop Christmas” with the line “Oh, what a miserable year, but what a time to be alive.” I second that notion!
Last year I alluded to hopes for the new drug Trikafta, which has become a reality this year! It arrived none too soon to put the brakes on a steady long term downward trend in my lung function. It has made a huge difference in my overall health, across pretty much every body system. My lung function has improved and ironically, the combination of Trikafta and social isolation has led to this being my healthiest year in at least 15 years.
Trikafta is a triple combination therapy and is amazing news for the CF community. This drug is a credit to the Cystic Fibrosis Foundation’s vision and branching out into innovative research partnerships. The success of this treatment also paves the way for future drugs that will build on this success to work even better for even more CF patients.
For my part, feeling better physically has helped me spend more time outdoors with my family. Having spring and fall sports cancelled allowed us to spend more time together on fishing adventures. This included a salvaged father-son camping trip in June where we camped out in a friend’s scenic apple orchard and some great father-daughter time with Brooke in September. We hunt for fish, hang out, and the kids teach me how to focus on having fun. I marvel at how flexible the kids have been this year.
Hello, I hope that this letter finds you well, and that you and your family are weathering the pandemic as well as can be expected.
This year has certainly been one filled with anxiety. At times it has felt like riding on the “Yankee Cannonball” roller coaster at Canobie Lake Park, a timber beast built in the 1930’s. The rickety ride instilled a fear that you could be flung off at any point. The hills would give you a weightless feeling, momentarily removing your connection to normal life and leaving you disoriented. I’ve had notions of taking the kids someday, but they just made it through 2020 so I think that can be considered close enough.
At the outset of the pandemic when this novel virus emerged and began to punish people’s pulmonary function, I appreciated that so many people thought of my lungs. Like other CF patients I have been social distancing, washing hands, and worrying about germs for quite a while. The normal protocols in place for a visit to the CF center at Mass. General look pretty much like what the new COVID-19 protocols look like when they show an Emergency Room on the evening news.
The news across the board has been pretty tough this year. As of even just a week ago, I could not get any momentum for putting together a Holiday cd. I did not seem to have enough mental bandwidth to accommodate screening dud Holiday songs without turning into The Grinch. I credit my son Wynn and his persistence, as after sending me four or five stinkers he suddenly came up with about ten songs that merited a listen. Two all-nighters later and boom, we had the foundation for a 2020 album.
I am hopeful that this year’s cd “The 2020 Experience” helps you enjoy the 2020 holiday season and retain some hope for moving on into 2021. It’s tough to argue when Ben Gibbard points out “People have a way of acting crazy, when they think they’ll be dead in a month.” That line helps me empathize with people and all of the stresses they are under lately. Robbie Williams opens his track “Can’t Stop Christmas” with the line “Oh, what a miserable year, but what a time to be alive.” I second that notion!
Last year I alluded to hopes for the new drug Trikafta, which has become a reality this year! It arrived none too soon to put the brakes on a steady long term downward trend in my lung function. It has made a huge difference in my overall health, across pretty much every body system. My lung function has improved and ironically, the combination of Trikafta and social isolation has led to this being my healthiest year in at least 15 years.
Trikafta is a triple combination therapy and is amazing news for the CF community. This drug is a credit to the Cystic Fibrosis Foundation’s vision and branching out into innovative research partnerships. The success of this treatment also paves the way for future drugs that will build on this success to work even better for even more CF patients.
For my part, feeling better physically has helped me spend more time outdoors with my family. Having spring and fall sports cancelled allowed us to spend more time together on fishing adventures. This included a salvaged father-son camping trip in June where we camped out in a friend’s scenic apple orchard and some great father-daughter time with Brooke in September. We hunt for fish, hang out, and the kids teach me how to focus on having fun. I marvel at how flexible the kids have been this year.
The adults have attempted to adapt as well. I have been working from home full time out of a makeshift office since March. I feel guilty as the kids are missing out on in-person school on my account, as we have kept them home so that they don’t end up bringing something bad home to me. We find ourselves with more time together at home than we’ve ever had (or wanted?!). But paradoxically we get less quality time as the normal bounds of work, school and home overlap like a Venn diagram shaped like a stack of Oreo cookies.
The only thing as extreme as everything going on this calendar year, with hurricanes, forest fires, floods and viruses is the generosity of people like yourself that have shown support for this fundraiser year after year. Honestly, I am not sure how my personal charity fits into the context of everything going on that is worthy of our support and attention. I do know that together we have raised over $89,000 since 2007: enough to truly make a difference!
I humbly ask for a donation to the CF Foundation if you'd like a Christmas cd. It’s easy to contribute: Just go to my page on the CF website and click to donate. If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I never take offense.
The up to date fundraising totals and lots more information about the fundraiser can be found at: http://cfchristmascds.weebly.com. Go check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know- at this time I am requesting that people do not post the fundraiser on facebook or other social media.
2020 may not have been the year we planned, the year we would ask for, or even a year we could have imagined. But by surviving it we can be more thankful for what we have moving forward.
We are all blessed to see Christmas one more time.
Be safe, be well, and good luck in ‘21!
-Jamie
The only thing as extreme as everything going on this calendar year, with hurricanes, forest fires, floods and viruses is the generosity of people like yourself that have shown support for this fundraiser year after year. Honestly, I am not sure how my personal charity fits into the context of everything going on that is worthy of our support and attention. I do know that together we have raised over $89,000 since 2007: enough to truly make a difference!
I humbly ask for a donation to the CF Foundation if you'd like a Christmas cd. It’s easy to contribute: Just go to my page on the CF website and click to donate. If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I never take offense.
The up to date fundraising totals and lots more information about the fundraiser can be found at: http://cfchristmascds.weebly.com. Go check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know- at this time I am requesting that people do not post the fundraiser on facebook or other social media.
2020 may not have been the year we planned, the year we would ask for, or even a year we could have imagined. But by surviving it we can be more thankful for what we have moving forward.
We are all blessed to see Christmas one more time.
Be safe, be well, and good luck in ‘21!
-Jamie
2021 Letter:
Hello, I hope that this letter finds you well.
I think I was expecting at this time last year that the pandemic would be in the rear view mirror by now. No such luck quite yet.
I got a call at the beginning of this month that my daughter Brooke had been exposed to COVID at school. I had to run to pick her up, and worry we were bringing COVID home to the house. She came down with a fever the next day, a positive COVID test the day after that, and had fevers off and on for the next five days while she stayed in bed.
Thankfully things did not get worse from there, with no positive tests for the rest of us. I know things have turned out worse for a lot of individuals and families so we feel fortunate. With 2/3 of the students out by the end of that week, their Catholic school was closed down through the rest of November as they went remote again.
Brooke was in isolation inside the house, but the second half of her quarantine featured afternoon play time outside. She and I had a hotly contested tree climbing contest one day, and during another adventure she fell into a swamp. It was inconclusive if "lifting someone leg deep in a mudhole" constituted a close contact or not; we couldn't find that in the CDC guidelines. Another silver lining is that the time in isolation has led Brooke to start cuddling with me again on some weekend mornings, a practice I feared she had outgrown. It probably has not come up in prior years' emails, but I am a big fan of cuddling.
Hosting meetings over zoom, which is how I spend most of my time nowadays working from home, is the polar opposite of cuddling. I recently moved into a new position that focuses more on water quality, which I think will be a great change for me long term. The pandemic was a tough time to be a manager.
Being home has been beneficial to managing my physical health, as it results in a lot less germ exposure. I have had a solid run of avoiding IV cleanouts despite a few close calls, and I'll try to keep that running. Running has actually helped with that, as now in middle age I can can actually get out of bed in the morning and try to go jogging before logging on. The positive effects of a 17-year marriage are showing as Andrea has been fly fishing more this year and I've started running; our hobbies are rubbing off on each other.
A prerequisite for being married for that long is being around; I'm not the only CF patient living longer these days. It's no wonder with how full the CF treatment development pipeline is. My experience with Trikafta seems to back up some amazing statistics from the 2020 CF patient registry: the percentage of patients treated with IV antibiotics for an exacerbation was more than cut in half from 40.4% in 2019 to 17.2% in 2020. The CFF reports a whopping 40% decrease in death (it can't be more blunt than that). The median predicted survival age has moved up to 50 years, up from 41.6 years as calculated in 2015! An increase of more than eight years is news to celebrate!
Lately, I think my wisdom is waxing but my attention to detail is waning. Maybe it's the grey hair that influences those traits? The kids are getting old enough to offset some of those gaps, as with no ideas for a theme or a cover for this year's holiday CD Wynn stepped in to fill that void.
Wynn is always drawing or tracing, so I asked him to work on a cd cover. There was no other guidance, other than he should make it square and leave a border so nothing would get cut off. (He can't follow directions, and I can't remember them. You should see us fishing together). But he cranked it out, and said the lines connecting everything meant "we should call it Christmas Connections." Sold! Works for all the great people involved with this fundraiser, for the family and friends that keep us going all year long, and the germs we share as well. Check it out and let us know what you think.
As far as the music: "Wow, it is mellow this year" was the review my mom provided of the prototype music playlist. So it does not appear to be suited for your Christmas raves. I hope it will be OK with the core of very generous, outgoing crowd of folks that this email goes to. I am thinking I will try to follow Raul Malo and the Maverick's "One More Christmas" (the closing song in this year's track list), to do one more year of the Christmas cd. That would be #20...which came about because people like yourself are going to put us into six figures this year! I never would have dreamed that would be possible!
Hello, I hope that this letter finds you well.
I think I was expecting at this time last year that the pandemic would be in the rear view mirror by now. No such luck quite yet.
I got a call at the beginning of this month that my daughter Brooke had been exposed to COVID at school. I had to run to pick her up, and worry we were bringing COVID home to the house. She came down with a fever the next day, a positive COVID test the day after that, and had fevers off and on for the next five days while she stayed in bed.
Thankfully things did not get worse from there, with no positive tests for the rest of us. I know things have turned out worse for a lot of individuals and families so we feel fortunate. With 2/3 of the students out by the end of that week, their Catholic school was closed down through the rest of November as they went remote again.
Brooke was in isolation inside the house, but the second half of her quarantine featured afternoon play time outside. She and I had a hotly contested tree climbing contest one day, and during another adventure she fell into a swamp. It was inconclusive if "lifting someone leg deep in a mudhole" constituted a close contact or not; we couldn't find that in the CDC guidelines. Another silver lining is that the time in isolation has led Brooke to start cuddling with me again on some weekend mornings, a practice I feared she had outgrown. It probably has not come up in prior years' emails, but I am a big fan of cuddling.
Hosting meetings over zoom, which is how I spend most of my time nowadays working from home, is the polar opposite of cuddling. I recently moved into a new position that focuses more on water quality, which I think will be a great change for me long term. The pandemic was a tough time to be a manager.
Being home has been beneficial to managing my physical health, as it results in a lot less germ exposure. I have had a solid run of avoiding IV cleanouts despite a few close calls, and I'll try to keep that running. Running has actually helped with that, as now in middle age I can can actually get out of bed in the morning and try to go jogging before logging on. The positive effects of a 17-year marriage are showing as Andrea has been fly fishing more this year and I've started running; our hobbies are rubbing off on each other.
A prerequisite for being married for that long is being around; I'm not the only CF patient living longer these days. It's no wonder with how full the CF treatment development pipeline is. My experience with Trikafta seems to back up some amazing statistics from the 2020 CF patient registry: the percentage of patients treated with IV antibiotics for an exacerbation was more than cut in half from 40.4% in 2019 to 17.2% in 2020. The CFF reports a whopping 40% decrease in death (it can't be more blunt than that). The median predicted survival age has moved up to 50 years, up from 41.6 years as calculated in 2015! An increase of more than eight years is news to celebrate!
Lately, I think my wisdom is waxing but my attention to detail is waning. Maybe it's the grey hair that influences those traits? The kids are getting old enough to offset some of those gaps, as with no ideas for a theme or a cover for this year's holiday CD Wynn stepped in to fill that void.
Wynn is always drawing or tracing, so I asked him to work on a cd cover. There was no other guidance, other than he should make it square and leave a border so nothing would get cut off. (He can't follow directions, and I can't remember them. You should see us fishing together). But he cranked it out, and said the lines connecting everything meant "we should call it Christmas Connections." Sold! Works for all the great people involved with this fundraiser, for the family and friends that keep us going all year long, and the germs we share as well. Check it out and let us know what you think.
As far as the music: "Wow, it is mellow this year" was the review my mom provided of the prototype music playlist. So it does not appear to be suited for your Christmas raves. I hope it will be OK with the core of very generous, outgoing crowd of folks that this email goes to. I am thinking I will try to follow Raul Malo and the Maverick's "One More Christmas" (the closing song in this year's track list), to do one more year of the Christmas cd. That would be #20...which came about because people like yourself are going to put us into six figures this year! I never would have dreamed that would be possible!
I humbly ask for a donation to the CF Foundation if you'd like a Christmas cd. It’s easy to contribute: Just go to my page on the CF website and click to donate. If you would like a copy of this year's cd I’m asking for a minimum $10 donation for each cd you'd like. As always I am very thankful to all the folks who donate more in the spirit of giving as it makes the fundraiser the success that it is; also if you'd like to donate but don't want any cd's I never take offense. All donations made on Giving Tuesday will be matched dollar for dollar!
The up to date fundraising totals and lots more information about the fundraiser can be found at: http://cfchristmascds.weebly.com. Go check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know- at this time I am requesting that people do not post the fundraiser on facebook or other social media.
We are all blessed to see Christmas one more time. Be safe, be well, and thank you for making a difference!
-Jamie
The up to date fundraising totals and lots more information about the fundraiser can be found at: http://cfchristmascds.weebly.com. Go check it out. The web link might also make it easier for folks to pass along info about the fundraiser to others they know- at this time I am requesting that people do not post the fundraiser on facebook or other social media.
We are all blessed to see Christmas one more time. Be safe, be well, and thank you for making a difference!
-Jamie