Friday, August 11, 2006
Tomorrow is Here; Donate TODAY
The man for whom time stretches out painfully is one waiting in vain, disappointed at not finding tomorrow already continuing yesterday.
--Theodor Adorno
The Cystic Fibrosis Foundation uses the phrase "adding tomorrows every day" as their tagline. I am deeply appreciative of all the work that the CFF does and for the ways that their fundraising efforts are enabling researchers to make "Great Strides" toward finding a cure for CF. The Foundation has lived up to its motto, and has done much to add many tomorrows for those of us who have CF. Thanks to the advancements in modern medicine and a broader knowledge base about the disease, doctors and healthcare providers are seeing a new generation of CF patients--adults.
Unfortunately, adult patients like myself and our doctors alike are stymied and frustrated by the lack of information and understanding about living with CF beyond the pediatric and adolescent years. There is an unmistakable gap that has yet to be filled for us. Tomorrows have been added, but now what? What do we do with them?
Perhaps the reason that so many people only understand CF as a disease that takes the lives of children is because of public relations efforts on the part of fundraising groups. Afterall, the idea of contributing money to a cause that helps find a cure for a child tugs on the heartstrings. But what about those of us who have crossed over into our tomorrows? We may no longer have the face of an innocent child, but we are still battling the same viscious disease we've had since childhood.
There is a need for increased awareness of the issues that concern adults with cystic fibrosis. Our quality of life can grow more difficult as each today becomes tomorrow. Today there is a need that must be filled. Today we need the funding for research that will not only add tomorrows every day, but research that will ultimately result in a cure. We've waited long enough.
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If you would like to donate TODAY to help find a cure for cystic fibrosis, please visit the Cystic Fibrosis Foundation's online donation form by following the link below.
Donate TODAY to the CFF
Unfortunately, adult patients like myself and our doctors alike are stymied and frustrated by the lack of information and understanding about living with CF beyond the pediatric and adolescent years. There is an unmistakable gap that has yet to be filled for us. Tomorrows have been added, but now what? What do we do with them?
Perhaps the reason that so many people only understand CF as a disease that takes the lives of children is because of public relations efforts on the part of fundraising groups. Afterall, the idea of contributing money to a cause that helps find a cure for a child tugs on the heartstrings. But what about those of us who have crossed over into our tomorrows? We may no longer have the face of an innocent child, but we are still battling the same viscious disease we've had since childhood.
There is a need for increased awareness of the issues that concern adults with cystic fibrosis. Our quality of life can grow more difficult as each today becomes tomorrow. Today there is a need that must be filled. Today we need the funding for research that will not only add tomorrows every day, but research that will ultimately result in a cure. We've waited long enough.
--
If you would like to donate TODAY to help find a cure for cystic fibrosis, please visit the Cystic Fibrosis Foundation's online donation form by following the link below.
Donate TODAY to the CFF
Comments:
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Thank you for the excellent post. I have an 18 month old son with CF and I look forward to his tomorrows...
I think your blog is a sure way to get the message out about the tomorrows no one is writing about.
You're right...kiddos with CF is definitely something that could get people open their wallets...
I met a 20 something with CF the other day and I cried when I met her. When my son was diagnosed, my first reaction was shock, then sadness.
Thank you for this insight. I personally would like to find more information about adults with CF. I will refer back to you blog for more insight. Thank you!
Michellene
Mom to Kai
I think your blog is a sure way to get the message out about the tomorrows no one is writing about.
You're right...kiddos with CF is definitely something that could get people open their wallets...
I met a 20 something with CF the other day and I cried when I met her. When my son was diagnosed, my first reaction was shock, then sadness.
Thank you for this insight. I personally would like to find more information about adults with CF. I will refer back to you blog for more insight. Thank you!
Michellene
Mom to Kai
Michellene,
I'm glad you found my blog and even more glad that you'll be checking back. I found an excellent source of encouragement last night when I discovered the CF Roundtable. I added a link to it in the sidebar of the blog.
I hope that your son will be able to enjoy relatively good health for a long while.
I encourage you to take one day at a time with your son. My personal approach to seeking out information (especially on the internet) is to look for it on a need to know basis. There's so much out there that can be really scary that may not ever even apply to your son's particular presentation of CF.
Thank you again for your note. Incidentally, I am 26. If you'd like to know a bit more about what it was like for me to grow up with CF and the things I learned, google the words "breathing room lauren living thriving" and go to the first link that appears there.
Warmest Regards,
Lauren
I'm glad you found my blog and even more glad that you'll be checking back. I found an excellent source of encouragement last night when I discovered the CF Roundtable. I added a link to it in the sidebar of the blog.
I hope that your son will be able to enjoy relatively good health for a long while.
I encourage you to take one day at a time with your son. My personal approach to seeking out information (especially on the internet) is to look for it on a need to know basis. There's so much out there that can be really scary that may not ever even apply to your son's particular presentation of CF.
Thank you again for your note. Incidentally, I am 26. If you'd like to know a bit more about what it was like for me to grow up with CF and the things I learned, google the words "breathing room lauren living thriving" and go to the first link that appears there.
Warmest Regards,
Lauren
Lauren, Isn't that funny that I was reading about the CF Roundtable for the first time on friday. And you found it on Saturday. Also, that is one complaint I have voiced numerous times to the CF foundation. They told us as kids to do treatments so that we could live to be older. Now what? A lot of kids I know get to be about 18-19 and give up because they don't know what to do. I have been trying to get the CF Clinics to start a mentor program of some sort to allow us old people to help the younger ones know what is available. That you can have a successful career and a family and a home and enjoy life. Getting someone to listen is the biggest issue.
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