It’s a shock when families learn that Huntington’s disease is in their family. I remember in 1978 when my three (3) sisters-in-law, Lora, Marcia and Cindy found their mother’s death certificate from Napa State Hospital and the underlying cause of death was Huntington’s chorea.
HDSA Social Workers are often the first voice that someone new to #HuntingtonsDisease may hear. #SocialWorkers offer information, education & access to community-based services within a specific region. Lisa Kjer-Mooney at HDSA UC Davis Center of Excellence is an awesome social worker that can help you find resources and support in Northern California.
Hey Huntington’s disease community!! Check out the series Virgin River on Netflix. In the finale for season four (4), it is revealed character Denny has Huntington’s disease.
Here’s information on the episode:
“Denny (Kai Bradbury) was quickly welcomed to Virgin River and was accepted as Doc Mullins’ (Tim Matheson) grandson in season four.
He spent a lot of time building a friendship with Lizzie (Sarah Dugdale), but was hesitant to start a romance and kept giving her mixed signals.
John and I discovered yet another TV series where Huntington’s disease was in the first episode of the new FX series, The Old Man. Jeff Bridges, the main character, shares that his wife died from HD. When we were watching it, and heard Jeff Bridges make that statement, we looked at each other, eyes opening wide, and I said, Wow, another series mentioning HD!!!
The episode that touched me the most was in, Call the Midwife, in 2018. I have to admit, I had a hard time watching it and it made me sad, but then I realized the episode heightened awareness of this horrific disease, showing a mom with HD and a daughter with Juvenile HD.
As far as I’m concerned Huntington’s disease(HD) is the cruelest disease on the planet. John and I lost his three sisters, Lora, Marcia and Cindy from HD complications at ages 41, 49 and 54. Marcia and Cindy struggled with HD for 15 and 17 years. Lora, self-medicated with alcohol, took a bad fall and had a cerebral hemorrhage and died.
HD is a rare, fatal, genetic brain disorder that has NO CURE. The symptoms are like having ALS, Parkinson’s and Alzheimers at the same time. American’s have the disease and 16% of all cases are children with Juvenile Huntington’s disease (JHD). Approximately 200,000 live at risk for inheriting the mutated huntingtin gene from their parent that has the disease.
#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month to encourage families to share their experiences with Huntington’s Disease(HD) throughout the month of May. Huntington’s disease is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously and there is
Okay HD Families across the country! Help us educate the world about the devastating impact that HD has on families. Use the logo in your social media posts to get the word out.
Most people have not heard of HD and those who have heard the name, Huntington’s disease, do not know how it devastates families for generations.
My husband’s family has had HD in the last five generations. John’s mom had HD as did his three (3) sisters, an aunt, two (2) uncles, his grandfather who committed suicide, and his great grandfather. John has distant cousins in the Carmel Valley, Salinas CA area that are struggling with HD.
Alyosha Zim’s new play Red Winged Blackbird opens on March 4 (Preview March 3) running through March 20 in the newly renovated Live Oak Theater 1301 Shattuck Avenue, Berkeley. Red Winged Blackbird is a story of transcendence, of rising above the frustrations of family struggles, inherited disease (HD), and dogmatic beliefs, to do what’s needed in the name of love.
March 9 Wed.- 7:30pm Dr Michael Geschwind, from UCSF HDSA Center of Excellence, and 2 individuals profoundly affected by Huntington’s Disease in their families. (Dawn Green, President of Northern California Chapter, and myself)
March 16 Wed- 7:30pm John A Powell UCB, Buddhist teacher Anouk Shambrook, & Rabbi Terry Bard
Set in 1960s New York and 1980s Colorado Rockies, Red Winged Blackbird, a powerful new play by Alyosha Zim is about brothers and lovers, Judaism and Buddhism, spiritual quests and identity. This is a story of transcendence – of rising above strongly held beliefs, and the struggle to care for seriously ill loved ones – to do what’s needed in the name of love. Red Winged Blackbird dances you to the end of love. The production’s Choreography is by Bridgette Loriaux, Scenic design by Nina Ball, Lighting by Kurt Landisman, Sound by Cliff Caruthers, Costumes by Valera Coble, and Props by Mirin Scassellati.
An individual who has a parent with Huntington’s disease has a 50/50 chance of inheriting the mutated huntingtin gene that causes Huntington’s disease (HD). I had never heard of HD until I met my husband, John, in college. Unbeknownst to John and his three (3) sisters, their mother had HD along with her two brothers and one sister.
Is this difficult to live with a flip of a coin chance? I can’t answer that but I can answer how difficult it was for me as I silently waited, watched, and prayed, these four (4) siblings would be free of the disease.
I married into the Marin family recognizing that, statistically speaking, at least two (2) of the four (4) sibling would inherit the gene. Living everyday with this RISK changed the way I looked at life and the threat strengthened my commitment and love for John because I knew our life could change in the blink of an eye.
John and I didn’t sweat the small stuff, nor did we put off something we wanted to do. Some people wait until they retire to do this or that, John and I did it as soon as we could. We both had good jobs which allowed us that freedom. When our children were born, we made as many memories as we could so if their dad developed HD, they had those memories.
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
To engage and create more advocates in order to change public policy to improve the lives of individuals and families living with Huntington’s disease (HD) at the Federal and State levels
What do we do:
Raise awareness about HD-related legislation
Advocate for HD-related legislation by engaging with US legislators
Recruit, activate and train advocates
Goals:
Pass legislation that facilitates access to care and/or improves the lives of people living with HD
Increase the number of legislators educated about HD and engaged with the HD Community
Advocate for HD-related legislation by engaging with U.S. legislators
Passing the Huntington’s Disease Parity Act, advocating for increased access to telehealth services through the Covid-19 Pandemic, Strengthening GINA
Training and Engaging Advocates like you so you can engage your US legislators in the fight to improve the lives of individuals and families impacted by HD