About Joyce Graff

I signed on to life with VHL (Von Hippel-Lindau genetic disorder) 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.

Together with two other mothers, we formed the VHL Family Alliance in 1993, gathering input from families around the world affected by this rare disease. All these years later we look back and are amazed at how much we have learned – more than we ever imagined we could learn! The power of ordinary people working together is truly awesome. Together we have helped provide essential clues to the doctors and spur their progress in improving treatment for this disease. Throughout these many years of dealing with my husband’s, my own, and my son’s health issues, working with people through the Alliance, through NORD, and through Cancer support groups, I have come to appreciate the value of partnership between doctor and patient. The best doctors are open and willing to listen and learn with the patient. The best patients are also open and willing to listen and work with their doctors to find solutions. When either the doctor or the patient shuts down those communications, the chances of a good outcome drop sharply.