The nonprofit my family supports, Huntington’s Disease Society of America (HDSA) is just one of the organizations making changes in their fundraising activities. Most HDSA Chapters/Affiliates, there are 100 Team Hope Walks across the U.S., are changing their Team Hope Walk, HDSA’s grassroots fundraiser, to a virtual event as is their Annual Convention on June 4-7, 2020. Sign up for Virtual HDSA Annual Convention; it’s FREE:
Please consider HDSA when making a donation to a worthy cause. Huntington’s disease is a rare, fatal, genetic brain disorder that has symptoms like ALS, Parkinson’s and Alzheimers. 10% of all Huntington’s disease (HD) cases are children with Juvenile HD. There are 41,000 symptomatic Americans and approximately 200,000 that are at risk for HD. There is NO CURE. HDSAwebsite
John and I will donate 100% of the purchase price from the nonfiction book, Watching Their Dance to the nonprofit, Huntington’s Disease Society of America (HDSA). For the past three (3) years, I have been donating $7.00 to HDSA when a book is purchased.
Sixteen (16) years ago, Trey Gray was diagnosed with Huntington’s Disease (HD) and given 10-15 years to live. He feels that his work as a professional drummer has helped him fight the disease. Visit http://hdsa.org for information on HD.
“I’m definitely beating the odds. And that’s a good thing,” he shares. “I want to be there for people to say, ‘You can do this. You can have an okay life!'”
There are hero’s in our world and Trey is one that the Huntington’s disease (HD) community embraces with love. To watch the Trey’s video, “Beating the Odds of Huntington’s Disease”, visit: Trey’s video
Bio on Trey: Trey Gray was born in Indianapolis, IN, USA as George Lewis Gray, III to his father, George and mother, Cindy. His passion for drums started at the early age of 6 and it was then that he knew his destiny. Gray had his share of rough starts yet always stayed focus on what he loved the most.
Many years ago I didn’t think I would be a mother. With the threat of Huntington’s Disease and John’s unknown gene status, deciding whether to have our own biological children or adopting was a huge question in both of our minds.
After about a year of discussing and checking out adoption, John said to me, “Therese I will leave it up to you. If you want to adopt or if you want us to have our own children, I’ll go with what you decide”. Having the decision power given to me, didn’t make it any easier.
I made my decision after I talked with my Grandmother McKibben. She shared her thoughts with these words that I had heard before. “You never know what going to happen in life”. Those were the words that had sent me back to John when I left the relationship because of Huntington’s disease.
I have been blessed in so many ways, and one is being a mother to our two terrific children, Vanessa and Keith. Everyday I give thanks that I made the decision to have our own kids. In 2016, John tested negative for HD, for which we are grateful, and because he doesn’t carry the mutated HD gene, our kids do not have to live a life AT-RISK.
My name is Therese Crutcher-Marin and I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. Therese’s Author Website
This is my HD story:Lora, Marcia and Cindy Marin, my sisters-in-law, have died from HD complications, struggling with HD for 15-17 years. These wonderful women, who were my dear friends, enriched my life by their positive attitudes, kindness and by their strength and resilience in fighting HD. I am blessed to have known the three women and they inspired me to write and publish the nonfiction, Watching Their Dance. I was determined to tell the Marin story.
My husband’s mother, Phyllis Iva (Cahoon) Marin was placed in Napa State (Mental) Hospital, in the late 1940’s, because of violent outbursts, hallucinations and her inability to take care of her small children. The medical folks were unable to diagnose her and my father-in-law never heard the Huntington’s Chorea until he saw it on her death certificate. She died in 1968, at age 48, by strangulation as she had to be tied down because the chorea was so bad.
“HUNTINGTON’S DISEASE is the CRUELEST Disease on the Planet”
We Can Never Lose HOPE…………. #LetsTalkAboutHD
To learn more about Huntington’s disease and HD resources, visit: http://hdsa.org
On Saturday, May 2nd, 2020, the Marin Family Team raised over $1,000.00 to help in the fight against Huntington’s Disease (HD) by participating in a VIRTUAL Team Hope Walk hosted by the nonprofit, Huntington’s Disease Society of America (HDSA). http://hdsa.org
HDSA is a premier nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease: a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer simultaneously, and there is NO CURE.
Keith & Fran Marin and Jody Sorenson, Fran’s mom
Since the fundraising event was VIRTUAL, my husband, John, myself and my 90-year old dad, Jim, walked in our neighborhood as did folks across the country. Our children and their spouses also walked and even though the HD community couldn’t be together, because of the Coronavirus, I felt a sense of camaraderie and solidarity in my heart.
My name is Therese Crutcher-Marin and I’m kicking off Huntington’s Disease Awareness Month. For forty years, I’m a Huntington’s disease (HD) advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. My author website: https://theresecrutchermarin.com
#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month to encourage families to share their experiences with HD throughout the month of May.
Many people are not familiar with Huntington’s disease and Juvenile Huntington’s disease (HD) and have never seen a person or child with HD or JHD.
HD is a rare,fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers – simultaneously. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.
There is NO CURE, YET!
10% of all HD cases are children with Juvenile Huntington’s Disease.
Why a HDSA Virtual Team Hope Walk? Because Family is Everything. While COVID-19 disrupts everyone’s lives, HD continues to impact the lives of so many families near and dear to us. And even though stay at home orders and social distancing may keep us physically apart, the spirit of the HD Community will not be broken.
The HD community will come together on May 02, 2020 @ 10 a.m. (PST) with photos and videos and stories of the community walking TOGETHER to support HDSA’s mission to improving the lives of everyone affected by Huntington’s disease.
For more information and resources, please visit http://www.HDSA.org. The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.
In the battle against Huntington’s disease no one fights alone. At HDSA, family is everything.