Columbus, OH 43229
October 18, 2000
Cystic Fibrosis Update - Bowl-For-Breath Fund-Raiser Ends November 12, 2000
Dear Friends,
It's fall, and for the 22nd year our family is participating in the Cystic Fibrosis Bowl-for-Breath! The "event" will be on November 5, 2000.
CF Family Update - Brent (25) had a healthy year. He lives in Lima, OH, but continues to visit the clinic in Columbus. Over the last few years, since Brent started working, he has become involved in his community. Brent feels research is the key to his future and because of the ongoing research, his future is much brighter (when he was diagnosed in 1978, the average expected lifespan was about 10; it has gradually risen to about 32!).
Derik (22) had one round of IV antibiotics this year. He also had some anemia, but that seems to be under control. He adjusts his twice daily therapy schedule around his culinary job. Derik has also educated many people around his workplace about CF. Derik sees research dollars funding studies like the one he participated in (and which concluded this year) on gene therapy. A cure is out there for the disease he has lived with since he was diagnosed at 6 months.
Misty (by the way, that Y2K event we mentioned last year - it happened - Misty and Derik were married on March 4th), was our bowler last year when Linda broke her arm. Misty has volunteered to be the Pace bowler again this year!
NOW for the CF Science Lesson! (I love this science stuff . Linda thinks I get too complicated, but I think familiarity removes some of the fear of this CF "monster" - Jim). Anyway, a quick and brief review - CFTR (Cystic Fibrosis Transmembrane Regulator - also called the "chloride channel") is the "thingy" that's broken in CF. Those of you who have some medical background, or maybe just some college biology, may remember learning about ATP (Adenosine TriPhosphate). According to my 33 year old college Biology book, "This compound, found in every living thing, is one of the most important substances of life. It plays the key role in biological energy transformations." According to a research study, the "chloride channel" (CFTR) must bind to ATP before the "chloride channel" can transport chloride! Several of the mutations which cause CF (over one hundred different mutations can cause CF, the most common one is called F508) are located at the point where ATP and CFTR bind. So there are now studies underway to determine why CFTR and ATP don't bind well in CF patients! Imagine! Something we learned in college REALLY IS IMPORTANT!
So, like the "bad penny", we're back again. Except we're hoping you'll send dollars (or checks payable to the "Cystic Fibrosis Foundation" to support CF research, instead. As long as you provide the support, we'll "Dare to Dream". We hope you can respond by November 12, 2000.
With MUCH Love and Thanks,
Jim, Linda, Brent, Derik and Misty