Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington's
Apr 25, 2017by Therese Crutcher-Marin and Pamela FeinsilberGet it TODAY, Jun 17FREE Shipping on eligible ordersMore Buying Choices
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Blog postIn the following video are the faces of Huntington’s disease (HD); a devil of a disease that attacks adults and children. Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It’s like having ALS, Parkinson’s and Alzheimers at the same time. 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
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Blog postJohn and I have just returned home from the Huntington’s Disease Society of America (HDSA) Convention in Los Angeles, California where I promoted my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. Author Website: http://www.theresecrutchermarin.com
The question I get asked most often when I interact with folks is, “Why did you decide to write a book?” My reply is, “The motive was purely selfish because -
Blog postHuntington’s Disease Society of America Annual Convention Continues:
Today, Saturday, June 9th, has many workshops to offer to attendees again. Here is the link to today’s schedule. https://guidebook.com/guide/119978/schedule/#date/06-07-2018
The morning will be spent listening to the experts at the HDSA Research Forum.
Please REMEMBER, some of the workshops will be LIVE STREAMED. Go to: https://guidebook.com/guide/119978/list/586374/ -
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Blog postHuntington’s Disease Society of America Annual Convention Continues:
Today, Friday, is the day we begin to explore Huntington’s Disease topics presented by experts/researchers/doctors in the HD world. The presenters travel from around the world to speak at this convention, so I feel very lucky to be attending.
At 9 a.m., the day will begin with the Opening Keynote Speaker.
By early morning, the attendees will select the Educational Workshops they wish -
Blog postHuntington’s Disease Society of America Annual Convention Continues:
Day 1. Leadership Day, for those in HDSA Chapters with Leadership roles, is today, June 7th. It will start off at 8 a.m. with a Continental Breakfast and at 9 a.m., Nancy Rhodes, Director of Field Development & Operations, and Bill Kline will be our first speakers. http://hdsa.org/about-hdsa/annual-convention/
After the meeting, at 6 p.m., there will be a Team Hope Walk -
Blog postToday, is a very exciting day as hundreds of folks flying, driving to Los Angeles to attend the 33rd Huntington’s Disease Society of America (HDSA) Annual Convention. http://hdsa.org/about-hdsa/annual-convention/
John and I are also on our way, in our RV; it’s about an eight hour drive from Northern California. We’ll be staying a Dockweiler State Beach; it has 3.7 miles of ocean frontage and 288 acres of beach and only four miles from the Marriott Convent -
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Blog postDid you know Woody Guthrie had HD? He did!
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 -
Blog postToday is the last day of May; HD Awareness Month. With the publicity generated this month by HD organizations and community members, hopefully, we have heightened awareness of this horrific disease that devastates HD family for generations. I wish to thank Dr. Carroll, a gene positive HD advocate and a devoted, brilliant HD researcher, who has done so much for Huntington’s disease. Jeff says it a great time to become involved in HD research! Dr Jeff Carroll, PhD
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Blog postMay is Huntington’s Disease Awareness Month
As the month of May comes to a close, I wish to honor the caregivers who lovingly cared or are caring for a loved one through the long, progressive disease process for the cruelest disease on the planet; Huntington’s disease; a fatal, hereditary disorder that progressively destroys the nerve cells in the brain. It’s describes as having ALS, Parkinson’s and Alzheimer’s disease at the same time. -
Blog postIn an earlier post this month, I showed some scenes from the TV show House, who had a character, 13, who was at risk for Huntington’s disease.
In the season 8 finale of Scrubs, a popular medical TV show, one of the doctors diagnoses a 70-year-old woman with Huntington’s disease. While manifestation of the disease is more common during middle age, presenting symptoms later on is possible. JD, the physician on the show, does his best to explain the disease -
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