The United States, with over 100 CF clinics and approximately 20,000 individuals with CF, has never featured a national conference for people with CF and their families. The International Association of Cystic Fibrosis Adults (IACFA), together with Cystic Fibrosis Research Inc. (CFRI), of Palo Alto, California, joined forces to meet this need. Held August 4 - 6th, 1995, the "Links Across the World" conference had an appropriately international flavor. The conference drew 65 adults with CF, 15 partners or siblings, 112 parents, 14 relatives (including four grandparents), 13 friends, 18 industry professionals and 24 medical professionals, representing a broad cross section of the CF world.
The conference committee selected beautiful Palo Alto to be the conference site, just a short drive from San Francisco, the rugged Pacific Coast and the vineyards of Napa Valley. The Holiday Inn hotel, sitting squarely in the heart of downtown Palo Alto, and directly across from the world-renowned Stanford University campus, hosted the conference.
Guest speakers from around the world gathered to share their special insights and expertise. Topics for presentation included transplantation, gastrointestinal concerns, home care, physiotherapy, lung function in small children, adult CF centers for CF adults, as well as new developments in CF research and several lively panels. For coverage of the conference, read on! If you would prefer to view a specific lecture or the conference in its entirety on videotape, CFRI has the taped event available for rental ($5 per tape) or purchase ($10 per tape). Contact CFRI for details.
IACFA held an annual business meeting reporting on the events and activities of the year, as well as new and old business to its constituents.
Martin Weibel from Switzerland and president of the International Cystic Fibrosis (Mucoviscidosis) Association (ICF[M]A) then delivered a presentation on "The World Perspective of CF" in which he highlighted the growing emergence of CF in underdeveloped countries and the significant problems encountered there when trying to establish recognition and treatment for CF. Many of these countries have significant economic problems and cannot or will not devote the necessary funds to challenge CF. Martin also highlighted the efforts of the ICF[M]A in these and other countries.
Receptions and meals provided the fuel of good food, stimulating conversations, and opportunities to make connections. In these relaxing, informal gatherings, stories of shared experiences, courage, dilemmas, hope and recourse were shared.
CFRI presented its annual achievement award to Dr. Jeffrey Wine of Stanford University. Dr. Wine, a renowned researcher, studies the fundamental defect of CF and the disease process in an effort to further pharmacological and gene therapy efforts for the disease. Dr. Wine promised not to be complacent and to continue diligently and doggedly in his research pursuits.
The CFRI/IACFA conference inspired many to respond with personal comments or handwritten letters.
Elyse Elconin-Goldberg, an adult with CF from Los Gatos, California, said, "It was wonderful having IACFA representatives present not only for the many CF adults who came from throughout the United States, but also for parents and family members of young children with CF who attended. The success of this conference goes way beyond the exchange of medical and scientific information. It gave the CF adult community a unique opportunity to come together and share personal experiences of living with CF. Many friendships were made that go beyond the bond of CF that we share." Eric Heilman, from San Francisco, is the father of Maxwell, an infant with CF. "We're very encouraged about the possibilities," he said. "We already had hope. But I learned that there are more sources of information. Learning that has been the most valuable thing."
Judy Larson, Ph.D., support group facilitator, commented: "I ... compliment you on the extraordinary job that you and your committee did.... Of the numerous conferences I have ever attended, this was by far one of the best in quality and organization.... It never ceases to amaze me how many wonderful people are coping with such extraordinary circumstances and don't realize how amazing they are...."
Julie Judge, parent of an adult with CF wrote: "Orchids to CFRI and IACFA for a memorable conference!.... Tom and I left convinced that attending the conference was one of the best things we've ever done. The scope and depth of the material covered as well as the opportunity to interface with a very good workshop was truly satisfying. Once again, I thank you for being such a vital link in our quest for help and knowledge."
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