Joyce Graff, Brookline, Massachusetts 
Founder and Co-Chair, 1993-1999; Editor, VHL Family Forum, 1993-present; Editor, Handbook; Chairman of the Alliance 2001-2003; Executive Director, 2003-present
I signed on to life with VHL in 1962, when I became engaged to Frank Warren Graff. Frank was diagnosed with VHL at the age of 15 in 1956. We were married at nineteen. 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 degree at Cornell University, and Master's and Ph.D. from the University of Michigan. His dissertation, The Strategy of Involvement: a Diplomatic Biography of Sumner Welles, was published as part of Prof. Frank Freidel's series on American Diplomatic History. His proudest achievement was our son, born in 1971.
Frank's outstanding academic career and success as a history professor in the face of the challenges VHL and blindness threw into his way, were inspiring to those of us who were closest to him. It was Frank's wish that we learn as much as possible from his experiences so that the next generation would stay healthier. He died in 1977, which is "ancient history" in medical terms for this disease -- at the beginnings of CT's, and before MRI's. Unable to see the tumors developing, we lived from crisis to crisis.
I am delighted to work with the Alliance to make the road easier for our son, and for all of us who live with VHL. My son and I are enormously grateful to our many new friends in our "other family," and to the many physicians who give so generously of their time to help us with the newsletter, handbook, and other materials.
Through 2002, I worked for the Gartner Group, an international high-tech advisory firm, as Vice President and Research Director for electronic messaging in the Intranets and Electronic Workplace research area.
I am a past Director of the National Braille Association and the Massachusetts Association for the Blind. I am a member of several community groups and industry organizations in telecommunications.
Radio show introducing Joyce Graff, The Powerful Patient
Originally published December 1993 (VHLFF 1:4). Modified 1997, 1999, 2002
More about Joyce: Thanks for the Miracles, A Family's Milestone
Graff honored by Genetic Alliance
Selected articles by Joyce Graff:
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