Browsing Category

HD Awareness

HD Awareness

Dawn Doster & Therese Crutcher-Marin’s HD Interview

Continued from Nov. 13 blog. Dawn Doster and myself heightening HD Awareness in an interview last May during Huntington’s Disease Awareness Month.

“Despite getting pregnant and married at a very early age, Dawn Doster made an achievement-strewn life for herself and her daughter after marrying her second husband (who, as we learned yesterday, adopted Doster’s two-year-old daughter Yvette). She earned a bachelor’s degree and an MBA, was a teacher and then the business operations chief for a federal agency. Despite the fact that her now-grown daughter has tested positive for Huntington’s disease, and her grandson is at risk for it, she says, “I am blessed to have a wonderful family and a good life.”

For Therese Cructher-Marin — whose memoir, Watching Their Dance, about “marrying into” a family with Huntington’s disease, is available at amazon.com — she takes courage from her family. Having lost her mother-in-law and sisters-in-law to the disease, which her husband miraculously doesn’t have, she writes eloquently about their struggle: “I admired them from the day we met for their ability to be positive, loyal, fun-loving, forgiving and kind. What I learned from them could never be found in a book, a classroom, a religious setting, or a therapist’s office. Forty years ago” — when she met the family of the man she’d marry — “I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.”   http://www.theresecrutchermarin.com  

As we reported yesterday, she’s scheduled to become president of the Huntington’s Disease Society of America’s Northern California chapter next year, a post formerly held by her friend Doster.

“My dream,” Crutcher-Marin said in our lunch interview, “is to get people with neurodegenerative diseases together and form an alliance. Because symptoms may take a long time to show up, we really have no idea how many people may eventually develop Huntington’s (200,000 may be at risk). It’s often true of these other diseases as well. We need to share information and stories.”

If the stories are similar to those in her book, they’re emotional, horrifying yet somehow hopeful.”

Therese’s first book is a memoir/nonfiction, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks file.

We can never lose HOPE…….Therese  

100% of the profits from Therese’s book is being donated to HDSA.

 

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

HD Awareness

Chris Furbee-Director of “Huntington’s Dance” Film

Chris Furbee will be honored at the San Francisco HDSA Team Hope Walk, October 21, 2017, for his dedication to heighten awareness for Huntington’s Disease. To sign up go to: SF Walk

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. 

When Chris Furbee picked up a camera to document his mother’s struggle with Huntington’s Disease, he used it as a tool to understand not only her struggle, but his own as well. Eighteen years later, with the help of his editor, Herbert Bennett, he crafted Huntington’s Dance, the kind of naked and honest film that gives all of us insight into coping with long-term illness. The film was produced in 2014 and an official Selection of the Slamdance Film Festival 2014 in Park City.

We can never lose HOPE………..Therese

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.  To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook