Cancer Research Fund - VHL Alliance

CONTACT:

2001 Beacon Street, Suite 208
Boston, MA 02135
617-277-5667 x4
www.vhl.org

Joyce W. Graff, Executive Director

DESCRIPTION:

Von Hippel-Lindau disease (VHL) is a rare genetic disorder characterized by the growth of tumors in certain parts of the body—the retina, brain, spinal cord, kidney, pancreas, and adrenal glands—which often become cancerous. The VHL Family Alliance was founded in 1993 by Joyce Graff, Susan Warnick, and Peggy Graham, with three purposes: to raise the visibility of VHL, to fund research into angiogenesis especially involving the VHL gene, and to improve diagnosis, treatment, and quality of life for individuals and families affected by the VHL and related tumors. So far they have raised and awarded more than a million dollars in grants, but the Internet has transformed their institutional model and influence. From three families, and with a small staff, their circle has broadened to more than 15,000 individuals in 102 countries. They have printed materials—including a Handbook on managing one’s health with the VHL syndrome—in eight languages, and online discussions in five. They have been cited in more than 30 medical journal articles as an excellent resource for patients, and their Director has been an invited speaker at medical meetings on four continents. But there is still no cure, and a great deal yet to be done. You can help.

(2007: HUMAN SERVICES: Health & Aging: Diseases: Research)