Since April 2000 the mission of the HDLighthouse Families Web site is to present and explain the latest research findings so that families afflicted by Huntington's disease can become proactive in their care, have hope for the future, and make good decisions in the present. Additionally we provide information that is vital to the the support of HD families. Where possible we will direct you to specialists in the your area of concern, but if we are able to provide better or more current information then you'll find it here.

A Special Gift: The Rose

I Am A Rose %CRY% I'm 51 years old, and five years ago I was diagnosed as being in the early stages of Huntington's Disease. This was not an easy time for me. I was dealing with both the practical loss of not being able to do everything I have always been able to do, but also dealing with emotional grief as well, because I was going through a true grieving experience, grieving the loss of me. It was a scary time as well, feeling that the future was scary. My grief was very real, as it should h

Barb Marshall

A Day on Capitol Hill

We signed up to be HDSA’s advocates a few years ago. We sent in our letters to elected officials some of the time when we would receive our HDSA advocacy alert emails. We recruited friends and family to contact their legislators regarding GINA (Genetic Nondiscrimination Act) and were delighted when it finally passed. When the HDSA advocacy team made H.R. 678, the Huntington’s Disease Parity of Act of 2009 a priority last year (original name, but H.R. 6259 in 110th Congress), w

Tim and Karen O'Neil

A Day in the Life, an HD Experience, Charlotseville, VA, April 18th

UVA’s HDSA Center of Excellence will host their annual conference on Saturday, April 18 at Zehmer Hall Conference Center on the University of Virginia campus in Charlottesville, VA. The conference will run from 8:30am to 4:00pm. Featured speakers will include Katie Moser, Madaline Harrison, M.D., and Sue Drumm, J.D. The conference is cosponsored by the UVA HD program and the Washington D.C. Metro Area Chapter of the HDSA. There is generally a small fee to attend the program which inc
Tim O'Neil
toneil@pediatricassociatespc.com
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