This organization is for all intents and purposes defunct. Despite the good heart and well-intended initiative by founder, Vix Kennedy, this organization never really got off the ground. It has literally done Nothing for years. The board is a motley crew of disinterested and disengaged do-nothings, most of the time MIA until it comes time to complain about something. The organization has no charter, no purpose, and no volunteers left. Those who have actually done valuable work (phone support, conference organization, web site) have long left. Donations go towards legal expenses and expenses board members incur. Information distributed by the organization is outdated and unreliable, there is no medical advisory board or oversight, no outreach, no research, no initiative, no services. Occasional flurries of activity are reactionary and often hostile; the majority of effort the organization does expend goes into fund-raising.
Money donated is money wasted.
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- EIN 30-0111901
- 7362 High Hill Dr Brighton MI 48116-9143 USA
- www.hs-usa.org
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Nonprofit Overview
Causes: Health, Specifically Named Diseases Research
Mission: We are dedicated to bringing about greater awareness and understanding of Hidradenitis Suppurativa, a disease widely spread but largely unknown, within the medical profession and in the public at large; to encourage teaching in the schools; to train health practitioners to help identify, diagnose, and treat HS; and to foster scientific research.We will provide a forum for Hidradenitis Suppurativa patient advocacy and rights.We will support educational outreach which instills awareness and knowledge of Hidradenitis Suppurativa by the public and private sectors.
Programs: HS-USA is currently workin on a genetic research study. The area of research most promising for finding the cause of Hidradenitis Suppurativa, and ultimately a cure, is the study of the disease's genetic origins. HS-USA is currently collaborating with the University of Michigan in the first HS genetic study conducted in the US.HS-USA is coordinating funding and has been actively involved in the recruiting of participants since the end of last year. So far 92 samples have been collected for the study, and the scientists at UofM are making progress in identifying genetic markers common among family members.