Podcast: Play in new window | Download (Duration: 40:12 — 36.9MB)
Subscribe: RSS
This interview is also available as a video on YouTube: https://youtu.be/vRsC493mlkg
Members of the 1994 Board of Directors of the VHL Alliance meet with Chandra Clark, current Executive Director, and Heidi Leone, Director of Advancement. We look back at what we were feeling when we began, the progress the Alliance has made, and our excitement as we enter a new era for VHL — the first real medical treatment for VHL tumors, and the prospect of reducing or eliminating the need for surgeries to control tumors. We talk with Chandra and Heidi about their plans to move the VHL Alliance forward in this new age. Featuring Susan Warnick Breslin, Lois Erickson, Joyce Graff, Fred Johnson, and Tom Rodenberg.
We hope that we may also inspire other patient groups to band together and work in partnership with the physicians and researchers in their space to find new ways to diagnose and treat their condition. When we met for that first time in 1994, we had no idea how much there was to learn! Over the past 30 years we have moved our condition from a three-sentence description in a medical dictionary to an important role in understanding many cancers.
