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Altheada Johnson, Brooklyn, New York
Director, 1994-2000, 2001-2007, 2008-2010
Altheada and Fred Johnson (click to read their story)
Altheada Johnson was elected by the Board in 1996 to be Chairman of the Board. This is the highest honor the Board can confer on one of its members. Altheada has played an essential role in fund-raising and public relations. She is a member of the Membership Committee, and focuses on Outreach to the medically underserved. She is a tireless letter writer, and has appeared on agendas at meetings on Minorities and Cancer (D.C.); Women and Genetics (Illinois), and she will present a poster at a conference in Alabama in September. Altheada is our in-house consultant on nutrition, and heads an informal alternative medicine interest group. She is in touch with doctors and researchers on the topics of pain management and pre-implantation testing.
Her husband Fred organized and supervised a computer bulletin board, the precursor to our Web service on the internet. He supervised our online service and internet account 1994-1998. He continues as a resource in the intricacies of office software.
Following a sabbatical year's leave from the Board Altheada returned in 2001 as Secretary of the Board, and a member of the Executive Committee. She served another six years on the Board, and following another sabbatical year, returned to be Secretary of the Board again 2008-2010.
She served nine years (2001-2010) as Chairman of the Hotline Committee, training and coordinating the committee of volunteers who staff the VHL hotline.
Her passion throughout her 17 years of service was in finding people of color who have VHL but who may not yet have a diagnosis helpful to their care. She focused in particular on Outreach to the medically underserved. She is a tireless letter writer, and has appeared on agendas at meetings on Minorities and Cancer (D.C.); Women and Genetics (Illinois), Monirities and Cancer (Alabama). Altheada was our in-house consultant on nutrition, and headed an informal alternative medicine interest group. She was in touch with doctors and researchers on the topics of pain management and preimplantation testing.
In 2007 she and Fred went with Joyce Graff to South Africa, for the opening meeting of our newest affiliate group in South Africa. Where only two percent of the population of South Africa is white, she and Fred were the only people of African descent present at the meeting. It was a dramatic message to the group in South Africa that VHL affects people of all races, and that the absence of people of other colors spoke clearly that there is more work to be done in diagnosing rare diseases among all the many ethnicities of South Africa. Fred and Altheada were their usual charming selves, and immediately endeared themselves to all present, imparting their messages of hope, faithfulness, and caring.
Please see our conversations with Altheada and Fred:
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