The good news is that the nonprofit, Huntington’s Disease Society of America(HDSA) has grown over the years and offers many resources to HD families. Unfortunately, at this time, there is no cure or therapy for the rare, fatal, genetic brain disorder yet, but the resources available can greatly improve the quality of life to a person struggling with the disease.
We had hope that we could host in-person events but changed to Virtual because of the concerns over the Delta Variant.
The committee members for the San Jose Team Hope Run/Walk and the San Francisco Team Hope Walk invite you to walk with them and help in the fight against HD; a rare, fatal, genetic brain with NO CURE. A VIRTUAL RUN/WALK is where you chose to run/walk; in your driveway, neighborhood, favorite park of on a treadmill.
When you donate $30 to either fundraiser, you will be mailed a 2021 HDSA Team Hope Walk purple T-shirt. (My favorite color)
Click here to sign up for the San Jose event where the top three (3) 10K runners will receive a medal.
The San Francisco Bay Area is huge; approximately 7.75 million live in the North Bay, South Bay and East Bay.
Because Huntington’s disease (HD) is a rare disease it affects approximately 100 people per million or 10 per 100,000. Juvenile Huntington’s disease (JHD) occurs in approximately 16% of all cases. Huntington’s disease is not prevalent within any particular population. All races and ethnic groups, and both sexes are affected.
So, to put that in perspective, it equates to approximately 700 individuals in the Bay Area that are struggling with Huntington’s disease.
THAT’S HOW RARE HUNTINGTON’S DISEASE IS!!
My plea to the San Francisco Bay Area Residents is to please support the HDSA San Francisco Bay Area Affiliate‘s two (2) upcoming fundraisers to help in the fight against this rare, fatal, genetic brain disorder with NO CURE.
The 3rd Annual San Jose Team Hope 10K Timed Run & 5K Walk on Saturday, Sept. 18, 2021 at Campbell Park in Campbell CA. Runners will be timed by Record Timing and the top three runners will receive a medal. Sign up here
The 15th Annual San Francisco Team Hope 5K Walk & Fun Run on Saturday, Oct. 2, 2021 at Chrissy Field, Sports Basement in San Francisco. Sign up here
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.
As we celebrate Huntington’s Disease Awareness Month, I reflect on the Marin Family’s Huntington’s disease journey through the generations. John’s mother side of the family, the Cahoon’s, battled Huntington’s disease (HD) and it’s overwhelming how many members of this family were affected.
HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s disease. There is NO CURE and when a parent has HD, the children have a 50/50 chance of inheriting the mutated huntingtin gene that causes the disease.
The Cahoon family history of Huntington’s disease dates back at least 4 generations.
John’s great grandfather- Wilbert D. Cahoon
John’s grandfather-Charles Wilbur Cahoon
John’s mother-Phyllis Iva (Cahoon) Marin
Lora, Cindy, Marcia Marin
John’s three sisters: Lora, Marcia and Cindy
John tested in 2016 at the Center of Excellence at UC Davis Medical Center in Sacramento. He tested anonymously and was negative for the mutated huntingtin gene. His three sisters didn’t have children and with John negative results, Huntington’s disease is no longer in our family.
#LetsTalkAboutHDis a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD…It can be a video, a photo or a written story – HD impacts every family differently and it’s time the world knows our story.
Unfortunately, I have to share sad news on the promising clinical trial on the drug Tominersen.
This statement is from Roche/Genentech on March 22, 2021. From David West, on behalf of the Roche/Genentech HD team Senior Director, Global Patient Partnership
Dear global HD partners,
As part of our ongoing partnership and following your request to receive important and timely updates about Roche’s HD clinical programme, we wanted to share an important update with you.
We have tough news to share, and we recognise that it will be even more difficult to receive.
Throughout the Phase III GENERATION HD1 study of tominersen in manifest Huntington’s disease (HD), an independent data monitoring committee (iDMC) has been in place. This committee is separate from Roche and Genentech and regularly reviews incoming clinical study data (that Roche and Genentech do not have access to) to review patient safety and assess the balance of potential risk versus potential benefit for study participants. The committee recently met for a pre-planned review of the latest safety and efficacy data from GENERATION HD1 and made a recommendation about the investigational therapy’s potential benefit/risk profile. Based on the committee’s recommendation, we will permanently stop dosing with tominersen and placebo in the GENERATION HD1 study. It is important to note that the recommendation is not based on any new emergent safety concern, but on a broad assessment of the benefit/risk of the treatment arms compared to the placebo arm over time.
Unfortunately, whilst this will raise questions in the community, we do not yet have access to the data from this study. What we can share with you at this time is provided in this letter and in our press release. Please find our press release here.
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