HD Awareness

Heightening Huntington’s Disease Awareness is Important Everyday

I’m posting this Interview with Ed Goldman of the Sacramento Business Journal again, because I think it has value to the HD community. It appeared in May 2017-– Huntington’s Disease Awareness Month. http://www.bizjournals.com/sacramento

“The headline on a news release about one of this country’s lesser-known charitable causes makes its case dramatically but authentically: “Imagine having Alzheimer’s, ALS and Parkinson’s at the Same Time.”

That can be the case for people who have Huntington’s disease, which many of us first heard about when it was listed as folk legend Woody Guthrie’s cause of death in 1967. As with ALS — amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease — Huntington’s, a progressive genetic neurological disorder, can cause muscles to shrivel. And all of this can be accompanied by severe memory loss (as with Alzheimer’s) and, like Parkinson’s, extreme nerve impairment.

It’s a living hell for those who suffer from it and a living nightmare for those who know they’ve inherited the gene: it may be only a matter of time before symptoms appear. Around 30,000 people have the disease, though another 200,000 are at risk, according to the women you’re about to meet, whose lives have been affected by the disease though they themselves are not patients.

One is Sacramento resident Dawn Doster, former president of the Huntington’s Disease Society of America’s Northern California chapter.

The other is Auburn resident Therese Crutcher-Marin, who is likely to become the nonprofit’s president in 2018. She’s also the author of Watching Their Dance, a frank and moving memoir subtitled, Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s  http://www.theresecrutchermarin.com   

If our get-together had a contemporaneous news angle, it was for the women to announce the group’s annual conference at the UC Davis Medical Center on May 20, as well as its Ninth Annual Team Hope Walk Sacramento, a benefit for families, such as their own, that have been impacted by Huntington’s. That family event, in Land Park, takes place on June 24. Information on both events is online at http://northernca.hdsa.org/.

Doster, whose accent is a holdover from being born and raised in Lizella, Georgia, about 11 miles from Macon, though she’s been in Sacramento for more than three decades. Her grown daughter, Yvette, has symptoms of the disease, whose gene had been passed along by her father, to whom Doster was married for a brief time. (He died of Huntington’s in his late 50s.) She’s been married to her second husband, Ron Doster, for 47 years. Ron adopted Yvette when she was two years old. She wasn’t told of her being at risk until she was 16. Married, she has a son, Haydn, who’s also at risk.”

We can never lose HOPE…………….Therese

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