Fred and Altheada Johnson of Brooklyn, New York, were awarded the 1995 Hope Award for Family Volunteers at the 5th Biennial Symposium on Minorities, the Medically Underserved, and Cancer, in Washington in April, honoring their outstanding work as volunteers for the VHL Family Alliance.

Altheada, who has VHL, lost the use of her legs following an unsuccessful spinal surgery. "Despite Altheada's physical limitation," says Joyce Graff, "she works diligently with physicians to raise awareness of this multi-system disorder to increase the probability that a doctor will consider a diagnosis of VHL. She is an excellent speaker and advocate for people with VHL. On the hotline, she is a great listener, a great source of comfort and encouragement, and an excellent resource for families." A registered dietitian, Altheada also works with the International Center for the Disabled in New York on nutritional programs.

Altheada has been chairperson of the New York chapter of the Alliance for two years, and serves on the Board of Directors. She and Fred established the VHL On-line Bulletin Board under the auspices of the United Methodist Church in New York, one of their many efforts to raise consciousness about VHL and identify persons who many have the disease.

Fred and Altheada were presented with a beautiful trophy, and a cash award which they donated to the VHL Family Alliance, to promote education and research on von Hippel-Lindau disease. At this conference Fred and Altheada were able to share their experience with VHL with people who had never heard of this disorder. "We were able to put VHL in the ears of many Very Important Doctors and others in cancer care around the nation."

"Attending this conference taught me a lot," says Altheada. "On top of all VHL may force us to deal with, we cannot forget to do breast self-examination, get routine Pap smears, and be screened for prostate cancer. Every VHL patient is a cancer survivor. Having cancer of any kind is not a death sentence. With early diagnosis and appropriate treatment we can all have Very Happy Lives."

As printed in the VHL Family Forum 3:2, June 1995:. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.