Ella's Elite

How to Donate

Brian — Fri, 30 Mar 2007 05:43:10 +0000

If you’d like to contribute to Ella’s Elite, the easiest way is online. Click on one of these links and follow the instructions here:

http://www.cff.org/Great_Strides/briankennedy4800
http://www.cff.org/Great_Strides/SarahKennedy
http://www.cff.org/Great_Strides/ClaireKennedy

If you’re interesting in writing a check, email me at brian.kennedy@gmail.com.

Interesting article on CF treatment

Brian — Wed, 28 Mar 2007 21:01:41 +0000

There’s a really interesting article from The New Yorker on assessing how good doctors and medical treatments really are. The author (a doctor himself), uses treatment of cystic fibrosis as an example. He documents how some treatment facilities have used the research on CF to improve their treatment of the disease. It is a long, but really interesting article.

A couple of things really struck me from the article - in the 1950’s the average life expectancy for someone with CF was 3 years. By 1966 it had reached 10 years and by 1972 it was up to 18. In 2003 the average life expectancy was 33. In some of the best treatment centers in the US, the average is as high as 47. One of the key things to note is that the Cystic Fibrosis Foundation was a key player in gathering and funding the research on treatment of CF.

Article: The Bell Curve

Welcome!

Brian — Wed, 28 Mar 2007 20:42:15 +0000

Our family is participating in the Cystic Fibrosis Foundation’s Great Strides fundraiser. Great Strides is the largest national fund-raising event for the Cystic Fibrosis Foundation. I’m sure you’ve all heard of cystic fibrosis (CF), but did you know that it affects 70,000 people worldwide and 30,000 in the US? CF is an incurable, life-threatening, genetic disease that clogs the lungs and inteferes with the digestive process. Oregon only recently began screening all infants for CF.

We got involved in the Great Strides walk because of some friends of ours. One of Sarah’s longtime friends has a pretty remarkable little girl - her name is Ella Deveaux and she has CF. Our daughter and Ella are becoming fast friends and we’ve been very moved by her family’s dedication to her care and the fight against CF. One of the challenges in fighting in CF is that it affects so few people in the US compared to other diseases. The lack of “market” makes it unprofitable for drug companies to invest in fighting it - thus private fundraising is critical.

We’re hoping to use this website to help raise money for the Cystic Fibrosis Foundation. We’re part of a series of teams raising money on Ella’s behalf. There are “Ella’s Elite” teams all over.

If you’d like to learn more about Ella, there’s a great video here.

If you’d like to donate, click on one of the “Friends” links on the sidebar.