Over the past two weeks I have enjoyed a wonderful celebration of our life and work through the last 20 years.
With my husband we went through 15 years with von Hippel-Lindau, or VHL, without ever meeting another person with VHL. His father died of VHL, eventually he too died of VHL. Our son was diagnosed with this disease 9 years after his father’s death.
In 1988, at the urging of a Debra Collins, a wonderful genetic counselor in Kansas, I met the wife of another man with VHL. We exchanged stories about our experienced. At the end of an hour we both felt the magic of that conversation – we had learned so much from one another! What if we could get all the families together and pile all our experiences and conjectures in one pile! Perhaps we could help provide clues to the doctors that would help to learn better ways to manage VHL. We found a third family and made a pact – among the three of us we would contribute one person’s-worth of effort, and would back each other when we needed time off.
The organization has grown from three families to more than 17,000 people in 108 countries. VHL affects every ethnic group, every country of the world. We not only brought families together, we teamed up with our physicians and with the researchers. We all realized early that none of us could find the answers alone – we all needed each other.
Last Saturday at the dinner honoring me and Dr. William G. Kaelin, Jr., of the Dana-Farber Cancer Institute, we celebrated that partnership and looked to the future. The vision I shared with the group was that a person with VHL would take one pill a day for the rest of his or her life, and would never get another tumor. But it will take work on all our parts to make that happen.
• Work on the part of the researchers to identify ways that a drug could make a difference.
• Work on the part of the physicians to diagnose people early enough that we can control VHL, and help us with any tumors or issues in the meanwhile, and to match us up with the drug that will be most beneficial.
• Work on the part of the patients and their families to test new drugs as they are ready, and determine which drug is best for which patient.
Let’s do it together – let’s find a cure for VHL.
I am thankful for my family, for the support of our friends, and also for the global support community of families, friends, physicians, and researchers that sustains us and will go forward and find the cure.
Joyce Graff
