Columbus, OH 43229
October 26, 1997
Cystic Fibrosis Update - Bowl-For-Breath Fund-Raiser Ends November 9, 1997
Dear Friends,
This is a year of beginnings and endings for us. Both of our boys are in college, now. Derik is now attending Hocking College in Nelsonville, Ohio majoring in Culinary Arts. Brent is in his final year at Ohio Northern University and should graduate next spring with a degree in Civil Engineering. We are very proud of both our young men and the way they are demonstrating their maturity in managing their health.
In last year's letter, we wrote about the advances in research regarding gene therapy to correct the defect which causes CF. This past summer, Derik participated in a clinical study for gene therapy to help determine safety levels and side effects. As part of the study, Derik had several bronchoscopies to "implant" a modified virus in a small portion of one lung and to examine the progress of the virus. The virus is designed to correct the CF gene defect in whichever cells it "infects". The effect lasts only as long as the "infected" cells live since the cells which reproduce are not affected. We won't know the results of the study for at least several months, however it appears the side effects are practically nonexistent.
Both Brent and Derik are trying a new type of "postural drainage" therapy. Over the years we have used "hand percussion" (using cupped hands to "lovingly" beat the boys in the chest to loosen the mucous) or a mechanical percussor (a hand-held machine replacing hand percussion to loosen the mucous). The boys are now using a "ThAIRapy Vest" to perform the same function. This is an inflatable vest connects to a machine which uses varying air pressure and vibration frequencies to "percuss" the chest. The boys are no longer dependent on a second person to help them or on their personal physical dexterity and flexibility to perform their daily regimen.
Our boys (young men) are continuing their education and pursuing careers in their chosen fields. They are maintaining their health. When they were diagnosed with CF 19 years ago, we had little hope they would get this far. Your dollars have enabled our boys and many other CF children to grow to adulthood and pursue their dreams. Your financial support provides the research funding that continues the advances in treatment of CF every year.
We are continually amazed at the support you have given our family over the last 19 years. Please continue your support by sending us a check payable to the "Cystic Fibrosis Foundation" by November 9, 1997.
With MUCH Love and Thanks,
Jim, Linda, Brent, and Derik Pace