Huntington's researcher fights the fear

When I wrote about a new test for Alzheimer's earlier this week, I neglected to mention that this kind of horror is already a living reality for some.

Those some are people whose parents had Huntington's Disease, who have been tested and found they too have the genetic marker for it.

I first heard about Huntington's in terms of the great Woody Guthrie, who died from it in 1967, aged 55. At the time his own son Arlo was just making his mark with a song called Alice's Restaurant.

Arlo decided not to be tested. He founded what is now the Huntington Disease Society of America. The spiritual home for the Huntington's Disease Advocacy Center is the church which inspired the song.

Arlo Guthrie recently turned 60. He's fine. A tribute concert was held for him in New York, just yesterday, celebrating the HDSA's 40th anniversary. The poster for that event is above.

Point is not all Huntington's stories are like Arlo's. The Toronto Globe & Mail recently profiled Jeffrey Carroll, a Huntington's researcher who was tested, and found he did have the marker for the disease.

The article notes that only 18% of Canadians who are at risk take the genetic test. Most are more Arlo than Jeffrey. Carroll became dedicated to finding a Huntington's cure on the day he learned he had the marker, which indicates he will start showing symptoms at 49. He's now 30.

Carroll used his knowledge to test his wife's fertilized embryos for the disease, to make sure his twins, born last year, will not face it. He is also working on a compound he says holds promise for a cure.

Rage, rage against the dieing of the light. And don't wait for old age to do it.