Cystic Fibrosis in the 90's: Creative Solutions and Medical Research at CFRI's Annual Conference

Julie Desch, M.D., adult with CF and CFRI Conference Committee Chairperson

Spring 1996

The 9th annual CFRI Conference will be held the first weekend in August (the 2nd, 3rd and 4th) at the Holiday Inn in Palo Alto, CA. We hope to attract hundreds of adults living with CF and parents of children (of all ages) with CF with our exciting program this year. As more and more CF patients are growing into healthy, successful and productive adults, we want to provide a forum that will uniquely address their needs. Our conference focus includes many speakers, panel discussions and workshops on strategies for achieving young adulthood healthfully, and living fulfilling and happy lives as we enter our 20s, 30s, 40s and on up. Notwithstanding, parents of newly diagnosed children and those with youngsters and adolescents with CF have much to learn from these seasoned adults who have lived through the young years with CF. For both groups the conference will address modern techniques in health management, updates on current research, support, discussion groups, the intimacy and community of shared experiences and the encouragement that comes from looking forward together as a group.

The weekend will kick off Friday evening with a reception and presentation of Wilma Bonet's one-woman play "Good Grief Lolita." This production received rave reviews from those fortunate enough to have seen it at last year's conference. (Because this play has a dream-like quality of time that can put one in the present and the past simultaneously, many people who saw the play more than once were aware of viewing it on new levels. Do not hesitate to see this fine work again.) Saturday's events will emphasize "creative solutions" to living with CF (i.e., beyond airway clearance treatments, IV antibiotics and pancreatic enzyme supplements). Dr. Martin Rossman, trained in both Western medicine and Acupuncture, will speak on "Conventional and Complimentary Approaches to Healing: Choosing Among Them." Rossman is founder and director of The Collaborative Medicine Center in Mill Valley, California, and a Clinical Associate in Medicine at the University of California, San Francisco Medical Center. He is also a professional speaker with great interest in the mind-body connection and the author of the book and tape set titled Healing Yourself. He will lead an afternoon workshop (limited enrollment) presenting his favorite topic, guided imagery and healing. Also discussed Saturday will be "CF and the Law: Knowing Your Legal Rights" by Beth Sufian, attorney and adult with CF from Texas. In the afternoon, we will break up into facilitated support groups, for much needed discussion and bonding between those with so many issues in common.

Sunday will be largely devoted to the latest research findings. In his usual authentic and inspiring style, Dr. Jeffrey Wine of the Cystic Fibrosis Research Laboratory at Stanford University (Stanford, California) will present a realistic update of the most promising clinical and basic research studies. Professor Gerd Doring, from the Hygiene Institut, Tubingen, Germany, a preeminent epidemiologist in the area of CF and cross infection issues, will focus on the prevention of lung infection. Dr. Karen Hardy, Chief of Pediatric Pulmonology and Director of the Cystic Fibrosis Center at the California Pacific Medical Center in San Francisco, California, will analyze current strategies in the clinical care of patients with CF. Finally, Dr. Kevin Cox, a gastrointestinal specialist at Stanford University Medical Center, will address the rarely discussed but extremely important subject of the effects of alcohol and substance use and abuse on the already compromised CF liver.

Panel discussions will also be featured. Saturday morning, several CF adults will lead a discussion entitled "Don't Let Your Fears Get in the Way of Your Dreams." We have gathered several interesting people (including Boston marathon runner Donald Perreault and IACFA chairperson Barbara Palys, among others) with widely varied approaches to maintaining optimal health, including physical, attitudinal, and motivational strategies, as well as mainstream and alternative therapies. Sunday afternoon will close with the second panel discussion "The Challenges and Rewards of Being a Parent with CF." Speakers, including Dr. Christopher Brown, Adult Care Pulmonologist at the Cystic Fibrosis Center at the California Pacific Medical Center in San Francisco, California, will share their feelings on their personal fears, the actual risks, benefits and rewards, energy drains and boosters, and the Kodak moments.

Hooked yet? These topics and more, with plentiful meals included and access to interesting vendor displays can be yours for only $80.00 per person ($200 for medical, academic, and industry professionals). Registration scholarships are available for those on limited incomes. Can't wait to see you there!

Reprinted from Spring 1996 CFRI News. Circulation: 13,000. Published by Cystic Fibrosis Research, Inc.,
560 San Antonio Road
Suite 103
Palo Alto, California 94306-4349

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