Remembering Jerry

I have four HD heroes. Sadly all have passed on at relatively young ages. Marjorie Guthrie launched the worldwide HD lay advocacy movement with a band of committed pioneers spread across the US and then the world. Subsequently, Ralph Walker, who founded the Huntington Society of Canada with his wife Ariel, called the tune and systematically but informally continued with a global vision and an agenda of needs, publications for example, that he fulfilled by connecting talented people. Dennis Shea was The Foundation for the Care and Cure of Huntington's Disease who raised millions to fund publications and collaboration (rather than competition) among researchers in their search for the HD gene. Jerry Lampson is my fourth hero.

Man, wouldn't he bristle at the accolade?

Jerry single-handedly took self-advocacy several leaps ahead in several domains in a short period. He squeezed this medium and the outer reaches of cyberspace for all its potential at the time. He was a scientific reporter and journalist in dedicated service to the worldwide family touched by HD. If the role of "the press" is to comfort the afflicted and afflict the comfortable," man, didn't he do that well? There were no sacred cows in Jerry's education and advocacy.

As a reporter he scooped the HDSA on the fish oil trial. He was the target of a "nastygram" that sought to discredit him. Looking back, Jerry had the story and he had it accurately. Those that threw stones at his credibility never recanted. But they never discredited him either.

As a journalist, his introductory paragraphs before research updates were classics. In a few words he would teach, put in context, editorialize, challenge and scold...sometimes all at once. Take a moment and reread them. They have stood the test of time.

Most important to me personally was an offhanded comment he made in a chat room once. We were talking about research and care. Supporting a strong commitment to science in the discussion, he typed in something like "But this old Marine won't abandon his wounded in the trenches." I think of that analogy very, very often. Jerry really got the balance - really understood that we have to do both.

I pray I get to go to a "HD Cured!" party sometime in my life. The first toast I'll offer is to my brother Jerry. His contribution was that big.

Hey, Jerry, we carry on...

From friend and chatroom manager Kelly B.

Jerry was a wonderful person who created this website to give other HD families what he did not have while caring for his wife with HD, support and a place to go where people understand HD. In creating the HD Lighthouse he gave all of us a home, and a large extended family to share our troubles with - a safe place.

It seems hard to believe that Jerry has been gone almost a year now. I miss both his guidance and his wonderful sense of humor both in the forum and the chatrooms. Jerry may be gone but he will never be forgotten by those of us who were lucky enough to have known him. To me Jerry is now the beacon of light that shines from the Lighthouse, guiding us all away from the rocks and lighting our way home.

Where ever you are Jerry, you are missed.