Dear Friends,
Columbus, Ohio has one thing on its mind in the fall - Buckeye football! We hope you will also remember that fall is also the time for the annual Cystic Fibrosis Foundation Bowl for Breath. We are participating for the 26th year. Our first bowling effort was less than one year after Brent and Derik were diagnosed with CF.
Our family update: Brent (28) has had a healthy year. He is getting ready for a move to Charleston, South Carolina. The "engineer" is thinking of a way to hook up his ThAIRapy Vest for morning treatment on his drive to work. Derik (25) had several rounds of IV antibiotics and surgery for acid reflux (CF coughing makes the condition worse). He lost 15 pounds but has gained most of it back.
Both boys have lived their lives to the fullest this past year - thanks to your generous donations to The Cystic Fibrosis Foundation. Our work in raising funds is for all children and adults afflicted with this incurable disease. With your help, the median age has gone from 8 to 32 since we started raising funds! One third of CF patients are in adult programs today; this was unheard of in the past. The gene has been discovered and incredibly promising clinical trials are going on. Jim will give you a research update.
Research: So much to tell and so little room... CF is, in many ways, on the forefront of genetic discovery. The Cystic Fibrosis Foundation continues to be very proactive in funding research programs that normally would only be used for diseases affecting larger portions of the population. But because of the unique opportunities in CF in dealing with a genetic disease affecting the airways, the discoveries enable spin-offs to spur improvements in other genetic diseases. The evidence is prominent: as Linda indicated, the median age is increasing nearly one year EVERY YEAR. CF clinics are having to hire physicians to deal specifically with adults - something unheard of just a few years ago when practically all CF patients died before reaching adulthood.
But, THE RESEARCH: High-throughput screening uses robotics to examine large numbers of compounds for their effectiveness in CF therapy. In a single day, thousands of chemicals can be screened for their potential as a CF therapy. Proteomics, another "high-throughput" tool, allows scientists to study proteins in cells and discover how they interact with each other. Proteomics allows scientists to discover how proteins interact with the CFTR protein (made by the CF gene) allowing it to move to the proper places in the cell. Once the function of the different proteins is understood, drugs can be investigated to help control (and correct) the process. Genomics technologies allow the examination of hundreds or thousands of genes simultaneously. Scientists look for genes or groups of genes to see how they coordinate with each other and respond to stress on the cells such as infection and inflammation.
Part of the success of the research in CF is a result of the synergy the Cystic Fibrosis Foundation encourages by bringing together groups knowledgeable about CF and learning how to apply new tools with groups knowledgeable about tools and willing to learn more about CF. We look for continued synergy of our enthusiasm and passion for solving this problem of CF with your willingness to share your dollars to fund the research which will ultimately conquer CF!!
Thank you for your continued support. Cystic Fibrosis has always set the pace in research. The new ideas of finding the gene, learning how the protein works, and understanding cell function have set the standard for research for many diseases. The Paces thank you for your gifts towards supporting research that searches for answers and continues to improve the quality of the lives of patients with CF.
Jim, Linda, Brent, Derik, and Misty Pace
PS: We are bowling on November 2, 2003. Please send your tax-deductible contribution to us made payable to The Cystic Fibrosis Foundation.
PPS: If you just CAN'T get enough of the research end of CF, check out:
http://www.cff.org
and click on "News" near the lower right-hand corner. You can actually listen to summaries of several of the sessions at the California Conference - the 17th time CF researchers and clinical care-givers had met to share ideas and programs on CF.