The Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate is conducting a new outreach strategy in the greater San Jose area. Huntington’s disease (HD), a rare, fatal, genetic brain disorder, is not known by most people. If they have heard of HD, they don’t know the details of how it affects a person and their family for generations.
HDSA Affiliate volunteers, Uma, David, Jay and myself are manning a table at the Campbell Farmers Market on Sundays from 9 am-1 pm spreading the word about the Cruelest Disease on the Planet; Huntington’s disease, and there is NO CURE.
41,000 American’s have the disease and approximately 200,000 live at risk of inheriting the mutated huntingtin gene that causes the disease. Of those 41,0000 symptomatic Americans, 16% are children with Juvenile Huntington’s disease.
By our outreach efforts, we hope to reach Bay Area folks who are struggling with HD and inform them of the services available to their family.
We Can Never Lose HOPE…
Author Therese Crutcher-Marin
Please make a donationto the nonprofit, Huntington’s Disease Society of America (HDSA) and help us in the fight against HD.
My sisters-in-law, Lora, Marcia and Cindy, are my champion’s as they are the driving force behind what I do for the Huntington’s disease community.
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. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
I was blessed to have worked the last 10 years of my career in a local hospice program that allowed me to truly help my neighbors. Grief, of course, was an emotion our patients experienced and part of our mission was to provide comfort to the bereaved.
The Huntington’s disease community, unfortunately, is suffering from three types of grief: anticipatory grief, pandemic grief and grief from two promising clinical trials that were halted.
NEW HARTFORD, NY – With more than three decades in the music business, renowned drummer, Trey Gray, is beating more than just drums, he is beating the odds. Gray found his passion for music at the tender age of five. In his early 20s, he relocated from South Bend to Nashville to pursue a professional career as a drummer. He played in local honky-tonks before landing an audition with Faith Hill, which became a huge turning point in his career.
After seven years with Hill, he began to notice changes in his body. In 2003, Gray’s life changed forever when he was diagnosed with a genetic condition known as Huntington’s Disease (HD). What is Huntington’s disease The neurological disorder, characterized by the degeneration of the brain’s nerve cells, deteriorates a person’s cognitive and physical attributes, mimicking symptoms of ALS, Parkinson’s and Alzheimer’s diseases. At the time of his diagnosis 17 years ago, Gray was given 10 to 15 years to live.
To help with awareness and funds to fight Huntington’s disease, Trey recently started TheTreyGrayFoundation
The following Article was written March 2020 before the Pandemic.
Author Therese Crutcher-Marin
“Trey Gray is on tour right now with some of the biggest names in country music. His personal struggles with a debilitating disease are also taking up a lot of his time.
He suffers from Huntington’s Disease . He was diagnosed back in 2003. From the onset of symptoms, the life expectancy of Huntington’s is about 10 to 15 years. It’s been 17 years since Gray started having symptoms. It’s why Gray is enjoying doing what he loves and spreading awareness about his challenges.”
To watch Trey’s video, Beating the Odds of Huntington’s Disease, click here: https://youtu.be/aJlLD-EvT1Y
Trey has four (4) children who are at risk for the mutated huntingtin gene. He was instrumental in creating the Huntington’s Disease Foundation another Huntington’s disease organization raising awareness, supporting families, funding research and finding a cure.
Trey wrote a blurb after reading my book, Watching Their Dance, and it appears on the back cover above Kate Miner’s blurb.
We Can Never Lose HOPE….
I’m an Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, author and a blogger. Visit my Author/HD Advocate Website
Kate Miner and her family are very involved in the fight against Huntington’s Disease (HD). Kate, an actress, musician, singer, Huntington’s Disease (HD) advocate, mother and star of the sitcom, Shameless. More on Tumblr about Kate and Shameless
Her sister, Jenne Coler-Dark is gene positive for Huntington’s Disease and has two children at risk. She found out HD was in her family in 2014 and has been working to advocate for patients, and raise funds for HDSA ever since.
In 2016, Jenne along with her family hosted the Freeze HD event in Los Angeles. She continues to participate in the Huntington’s Disease Society of America (HDSA) annual Freeze HD Event, along with other HD volunteer engagements with HDdenNoMore, and CHDI Foundation . Jenne is on the Board of Trustees for the nonprofit, HDSA.
I’m a HD advocate, Chair for the 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.amazonWatching-Their-Dance-Marrying-Huntingtons
Anita Dominguez and Denny Cone, HDSA Pacific Regional Officer and Staff, have thrown down the gauntlet challenging Chapters/Affiliates, in the region, to see who can recruit the highest number of new volunteers in six weeks beginning January 18th, 2021.
The challenge for a Recruitment Blitz may be focused on one specific volunteer need for Teams, Sponsors or Participants or it could be all encompassing to recruit for all areas of Team Hope Walk. Recruitment for volunteers to work on Committees and to fill board positions are also important to the Chapters/Affiliates. About the Pacific Region
The San Francisco Bay Area Affiliate team members accept the challenge and are busy planning the strategies to win this challenge! In California, the SF Affiliate extends from Santa Rosa to Gilroy, including the city of San Francisco, Oakland, and San Jose.
The San Francisco Bay Area Affiliate, one of the 55 Chapters/Affiliates across the U.S., of the nonprofit, Huntington’s Disease Society of America, is celebrating its first year of operation. Despite the pandemic, team members shifted to zoom monthly meetings, virtual events and have developed a Strategic Plan for 2021 to help in the fight against Huntington’s disease, provide Education Days at Stanford & UCSF Center of Excellence, organize outreach projects so HD families can find services to help their family.
On Saturday, January 11, 2020, the first Affiliate meeting was held at UCSF with 22 attending from Genetech, HOPES, community folks, UCSF & Stanford Centers of Excellence, and HDSA social workers/staff.
Author Therese Crutcher-Marin, HD Advocate
I want to thank everyone involved in the Affiliate in 2020 for their time and dedication and I’m excited to kickoff 2021 at our first meeting on Wednesday, January 6, 2021. At this first meeting of the year, we’ll be discussing the strategies to implement the 2021 Strategic Plan to outreach to the HD community in the Bay Area.
Kate Miner is a champion for Huntington’s disease and an amazing multi-talented woman.
On December 9, 2020, TVOM, an entertainment online magazine, wrote a story about her:
“10 Things You Didn’t Know About Kate Miner”
Here’s one of the 10:
8. Huntington’s Disease Runs In Her Family
“No matter how healthy of a lifestyle you try to lead, there will always be things that are out of your control due to genetics. A few years ago, Kate found out that Huntington’s Disease runs in her family. According to the Mayo Clinic, “Huntington’s disease is a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s disease has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders.” Kate tested negative for the gene that carries the disease, but her sisters tested positive.” To read the full article on Kate, visit: https://www.tvovermind.com/kate-miner/
Kate at a HDSA Convention with Michael Miller
Kate is a multi-talented woman; she’s a musician, singer, actress and Huntington’s disease advocate.Kate organizes the HD FREEZE Gala every year in Los Angeles that supports the nonprofit, Huntington’s Disease Society of America. Her celebrity friends attend and are very generous. In 2020, the event raised over $200,000.00, even with the pandemic raging. In 2019, HD FREEZE raised $420,000.00.
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.