CEO, Powerful Patient Inc, Founder VHL Family Alliance
Joyce Graff, CEO of Powerful Patient Inc and Founder of the VHL Family Alliance, has spoken about patient advocacy and von Hippel-Lindau disease in 26 countries on six continents. She founded the organization in 1993 and has held positions of leadership within the organization since that time. She served as Executive Director most of 1993-2011.
In addition to her current position with VHLFA, she has served on the Board of Directors of the National Organization for Rare Disorders for ten years. She was a member for five years of the Director's Consumer Liaison Group, a consumer advisory group of the National Cancer Institute. Joyce has been on the Governance Board of the only Kidney "SPORE" in the country for more than eight years. A SPORE is a Special Project of Research Excellence, a multi-year multi-million dollar grant from the National Cancer Institute, in this case to the Dana Farber/Harvard Cancer Center in Boston.
Joyce signed on to life with VHL in 1962, on her engagement to Frank Warren Graff. Frank was diagnosed with VHL at the age of 15 in 1956. He went blind at the age of 20, and battled a series of VHL tumors over the next 15 years: five brain surgeries, five spinal surgeries, and two kidney surgeries. During those same 15 years, he completed an undergraduate, Master's and Ph.D. degrees. Frank's outstanding academic career and success as a history professor in the face of his challenges inspired everyone close to him. He wished that others learn as much as possible from his experiences. Frank died in 1977.
Later, when their son was diagnosed with VHL, Joyce worked hard to find good medical care for him. Even in Boston most doctors did not remember much more than one paragraph from medical school about the disorder, giving her the idea to create a handbook on VHL management.
Over time, Joyce met other families living with VHL and worked with them to found the VHL Family Alliance in1993 as a way for these families to learn from one another and find effective ways to partner with doctors to improve treatment.
Starting with three families in 1993, the VHL Family Alliance is now in touch with more than 17,000 people with VHL in 108 countries, and has 18 affiliate organizations throughout the world. See http://vhl.org She is also a consultant for the HLRCC Family Alliance (http://hlrccinfo.org) and is the co-host of the weekly radio show and podcast, The Powerful Patient (http://powerfulpatient.org)
Ms. Graff's Lectures
A Patient's Perspective
- Frantzen C, Graff J, et al. Letter to the Editor regarding "Effect of pregnancy on hemangioblastoma development and progression in von Hippel-Lindau disease," J Neurosurgery, in press.
- Gormley, Myra Vanderpool and Joyce Wilcox Graff, Your Family Health Tree, 1991, 1993, 2008. A brochure to help affected families collect genetically relevant genealogical information and present it to their doctors and genetic counselors in useful form.
- Graff, Joyce Wilcox, ed., What You Need to Know about VHL: the VHL Handbook. VHL Family Alliance, 1994, second edition 1997, third edition 2005, 3.1 2009. This is the definitive book in laymen's language for patients and their medical teams. Distributed free by the VHL Family Alliance and on the web atvhl.org/handbook
- Graff, Joyce, Book review of Aubrey Milunsky, "Your Genetic Destiny," Journal of Medical Genetics, 2001.
- Graff, Joyce, "Familial Tumors: Improving Diagnosis, Treatment, and Quality of Life." Article for the Japanese Society for Familial Tumors, 2008.
- Lovitt, Graham, Julie Rejman, The HLRCC Handbook, 2012, 2013. Joyce Graff, advisor.
- Richard, Stephane, Joyce Graff, Jan Lindau, and Francois Resche, "Von Hippel-Lindau Disease," Lancet, vol 363, April 10, 2004.