Message From The Executive Director

By Ann Robinson, Summer 1994

Several important events have happened during the past few months. The Seventh Annual IACFA (International Association of Cystic Fibrosis Adults) was held in Paris, France. I was fortunate enough to attend, and I gained helpful insight into what it means to be a adult who has cystic fibrosis. As a result some of CFRI's publications and programs will have a new emphasis that focuses on adult issues. A report on the conference is included in this issue.

CF research continues to be exciting with gene therapy and cellular studies showing great promise. We are especially encouraged by recent studies reported at the medical conference showing that cellular transfer using both adenovirus and lipisome vectors in human subjects is working! CFRI is funding both gene therapy research and cellular research--such as Dr. Reddy's work, covered in this issue--because cell physiology information may accelerate gene therapy research.

We are most encouraged that the Flutter, a handheld chest physiotherapy device, was approved by the FDA on May 31, 1994. Sales are expected to begin by August in the USA. In a recent study conducted in Cleveland, subjects using the Flutter expectorated more than three times the amount of sputum expectorated using postural drainage and voluntary coughing, with no adverse affects. Look for an article on the Flutter in this issue.

At the conference I learned that every developed country except the USA provides government-funded health care for all their cystic fibrosis patients. Two French adults at the IACFA conference had heart-lung transplants that had been provided by their government. It was an eye-opener to see so many healthy CF adults from 15 other countries who were not worrying about how they were going to get health care and medicine. What can we do to solve this problem in the USA? Jane McCabe's article on insurance presents different personal perspectives on the availability of health insurance in California.

Thank you to all the CFRI supporters who have made all our research and programs possible. We are especially grateful to the more than 400 Mother's Day tea senders who helped make this year's tea the biggest ever. We are pleased to report that money is still coming in.

We most appreciate the 350 - 450 volunteer hours that are donated to CFRI every month by office volunteers who do everything from writing receipts, helping raise money, and providing data entry support. Volunteers are also doing outstanding work on annual events including the Arnie Fields Golf Tournament, Cystic Fibrosis Golf Tournament at Diablo Creek, Cystic Fibrosis Invitational Golf Tourney at Alamaden Country Club, Cystic Fibrosis Tennis Teachathon, the Ed Jensen 200 Mile Bike Marathon and the Ride 'n Stride (bikeathon and walkathon). Thanks to all of you for helping save precious lives.

Sincerely,

Ann Robinson

If you have questions or issues you would like addressed in future newsletters, please write to CFRI c/o the Newsletter Editor, or send email, cfri@ix.netcom.com.

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