Message from the Executive Director

by Ann Robinson

Fall 1994

Several important cystic fibrosis events have happened during the past few months. CFRI's 1994 Annual Conference was held in Palo Alto, California on September 24 - 25. The over 200 conference attendees included parents and grandparents of children with cystic fibrosis and adults having cystic fibrosis. We are grateful to our sponsors American Biosystems, Inc., Bay Area Home Health Care and Bay Area I.V. Therapy, Healthco Solutions, Ortho/McNeil Pharmaceuticals, Genentech, PARI Respiratory Equipment, Inc., Scandipharm, Inc., Solvay Pharmaceuticals, and Quantum Health Resources who, along with CFRI, made the conference possible. Thank you to my fellow conference committee members, Robin Modlin, Elyse Elconin-Goldberg and Darlene Batchelder. And thanks to all the speakers who reported on many aspects of cystic fibrosis. A summary of the conference is included in this newsletter.

Cystic fibrosis research continues to be exciting with the discovery of Gelsolin, a mucus thinner that is now ready for Phase I human clinical trials. We are encouraged by its potential as a mucus thinner. Look for an article on Gelsolin in this issue.

CFRI's Research Advisory Committee (RAC) is currently evaluating thirteen research proposals that may hold important answers for the control of cystic fibrosis. Four of the proposals offer new approaches to solving gene therapy issues, and others propose new ways of studying CFTR and the functioning of the chloride channels in CF cells. If you have ever considered increasing your commitment to CF research, this is a good time to do so. CFRI has more outstanding research proposals in need of funding now than ever before in our nineteen year history.

Thanks to CFRI's many volunteers, including Doug Modlin, Ph.D., chair of the RAC and his committee. Thank you also to the volunteer CF Summer Camp staff which includes Alisa Evans, Camp Director; Dr. Margaret DeLano, Medical Director; Dr. Jonah Kramer, Pediatrician; John Bartelt, Ph.D., Counseling Services; Linda Johnson, Physical Therapist; Dan Hunter, Respiratory Therapist; Mike Whitehurst, Activities Director; Dr. Steven Shak, Guest Speaker and all the camp counselors. Thanks to Ride 'n Stride volunteers and Committee Chair, Ed Kinney, Jr. who raised over $9,000 for CF research and CF Summer Camp. Kudos to Breakaway Bicycle of Dublin whose manager donated a great mountain bike to the Ride 'n Stride event. Lisa Giuliano, mother of Larissa and Jenise who have CF, won the grand prize of a bicycle trip donated by Backroads Bicycling by bringing in over $2,300!

Thank you to the Robert J. Mackey Foundation who recently held the Eighth Annual Bob Mackey Memorial Golf Tournament at Santa Teresa Golf Course in San Jose. The full field of golfers, dinner, raffle and dance brought in over $15,500 for CF research. We are deeply indebted to Bob and Nadine Mackey, Pam Schultz, and their golf committee for this outstanding event.

Thanks to office volunteers and Gail Robinson, Suzanne Gisinger, and Arlene Podell-Barr, our busy part-time office staff, who are very busy answering phones, processing mail, entering data and making bank deposits. You are all most appreciated. Thank you to everyone who is helping CFRI move forward and save precious lives.


Ann Robinson

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