1996 CFRI Conference Overview

Fall 1996

The Ninth Annual CFRI Conference was held in early August at the Holiday Inn in Palo Alto, CA. It opened with a warm and friendly reception, followed by an excellent presentation on Health Insurance for People with CF, by Beth Sufian, a lawyer practicing in Houston, Texas and adult with CF. Beth's southern warmth, thorough knowledge of her subject and natural ability at handling a group turned a potentially dry and overwhelming presentation into a highly informative forum that opened up the discussion and got us off to a good start.

Saturday was a mix of social, legal and health treatment issues. A panel of five adults with CF openly and honestly discussed their lives and dreams. Workshops on CF and the Law (also by Beth Sufian, see CFRI News, Spring 1996 issue for a summary of her talk) and Complementary Approaches to Healing followed. The discussion about conventional and complementary approaches to healing was led by Dr. Martin Rossman, a Clinical Associate in Medicine from the University of California at San Francisco and Director of The Collaborative Medicine Center in Mill Valley, CA. After a buffet lunch, the group attended support workshops dealing with emotional issues or workshops demonstrating several complementary health care therapies, such as imagery, massage and yoga.

Saturday evening focused on social pleasure, entertainment and acknowledgment. A lovely buffet dinner was served as guests mingled and swapped stories. Jim Hampton, father of twin girls with CF and CFRI board member, served as Master of Ceremonies for the after dinner program. After introducing CFRI Executive Director, Ann Robinson, and the conference committee, he introduced the CFRI Board of Directors. Then the CFRI Annual Service Award was presented to Dr. Meg DeLano, Medical Advisor for the CFRI Family Retreat (formerly called Camp) for her dedication and medical guidance to the cystic fibrosis community. Afterwards, George Marsh, whose fourteen-year-old daughter Lucy has cystic fibrosis, pulled together some local jazz musicians for a wonderful hour of music, dancing and socializing.

Sunday was a mix of scientific research, clinical and social issues. Dr. Jeff Wine, Director of the Cystic Fibrosis Research Laboratory at Stanford University, gave an inspiring overview of basic and clinical CF research. Dr. Wine has been giving highly informative research updates at CFRI meetings and conferences for many years, however, due to the pressures of his current research, he has informed us that he will not be able to lecture for us next year. We are deeply grateful for his conscientious presentations of information and his support of the CF community over the years. Dr. Gerd Doring, Professor at the Hygiene Institut, University of Tubingen in Germany was the next speaker. Dr. Doring's lecture, "Preventing Lung Infections in Cystic Fibrosis Patients," provided an enlightening account of his studies of the transmission of bacteria, especially bacteria that causes lung disease in people with cystic fibrosis and ways they are attempting to prevent it. Dr. Karen Hardy, Director of the Cystic Fibrosis Treatment Center at the California Pacific Medical Center in San Francisco, CA., spoke on "Cystic Fibrosis Clinical Care in the United States." Her talk outlined the current move to standardize treatment for cystic fibrosis patients. After lunch, Dr. Kenneth Cox, Chief of Pediatric Gastroenterology, Hepatology and Nutrition, at Lucile Salter Packard Children's Hospital at Stanford presented an excellent discussion on "Liver Disease in CF Patients and the Effects of Substance Abuse." Finally, the conference closed with a panel of three couples, one partner of each who has CF, who had taken on the privileges and rewards of parenthood. This honest discussion about going ahead with parenting despite the CF of one parent, inspired many forthright comments from the audience and ended the conference on a bright note of hope.

For those of you who were unable to attend the conference, detailed articles of each presentation are included in this newsletter. We also have videotapes of the conference available, so if one of the articles sparks your interest and you want to see the original presentation in its entirety, don't hesitate to call us. Tapes are $10.00 each for purchase and $5.00 each to rent. Please call the CFRI office to place an order: (415) 856-0546.

We have heard from many of you since the conference, thanking us for the camaraderie, inspiration, education and friendship. Your comments are very important to us, both in keeping us inspired and for planning for next year. In closure, I include some comments from Ray Goldstein (see photo), of Kenner, Louisiana, who summed up the experience for all of us. "... As a first year attendee, my personal experience opened my eyes to another world. The event was ABOUT US and FOR US. It couldn't have been more comfortable; no politics! Everyone was attending for the same reason: education, answers, and friendship... I never felt more AT HOME as well as belonging to the very special group... We all knew we needed each other to deal with this genetic disease on a[n] everyday basis... I can't compare this year's meeting to any past event, but the content and quality of the speakers and various panels would impress the bestx All the speakers made themselves available for questions throughout the entire meeting. I [have] never attended any forum that was so friendly and rewarding... The bottom line to all who have CF or [are] involved in any way, especially adults with CF, plan for next year. This is a winner..."

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