Today is the last day of the focused HDSA marketing campaign, #LetsTalkAboutHD, for Huntington’s Disease Awareness Month. Just because it is the last day, all the 50 HDSA Chapters & Affiliates around the country continue to raise awareness of this horrific disease.
Recently I had an individual ask me, “What good does it do talking about Huntington’s disease (HD)?”
There are many responses to this question. Here’s some of them.
By heightening awareness, we are educating the public about the disease.
Awareness can help a family struggling with a HD diagnosis to find services/programs they may need.
Explaining the rarity of HD may motivate folks to donate to the nonprofit Huntington’s Disease Society of America (HDSA) to help fight the disease. (there are more than 7,000 rare diseases affecting more than 30 million Americans)
Awareness may motivate folks to volunteer for HDSA.
Being aware of a disease and its symptoms means HD families are more likely to take preventative action, and go for screenings, tests and check-ups.
A lack of awareness of diseases or knowledge of options for screening and treatment is a serious barrier to good health.
Heightening awareness of rare diseases, like HD, are frequently debilitating, and patients may face additional challenges because of the limited knowledge of many rare diseases. Symptoms of rare diseases may resemble those of more common conditions, which often leads to a significant delay in getting a correct diagnosis.
Dawn Green and I are President’s of a Huntington’s Disease Society of America (HDSA) Chapter; Dawn leads the HDSA Northern California Chapter and I organize the HDSA San Francisco Bay Area Chapter. HDSA is a nonprofit and 90% volunteer based. There are 53 Chapters and Affiliates across the U.S. and all are managed by volunteers.
Huntington’s disease (HD) is a rare, fatal, brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers, simultaneously. There is NO CURE.
Because HD is very rare, HDSA’s business model focuses on its Mission Statement: HDSA is dedicated to improving the lives of everyone affected by Huntington’s disease and their families. HDSA fulfill’s their mission by providing programs and services to HD families across our nation so they may have the highest quality to their lives on their long HD journey.
HDSA’s Vision Statement: A World Free of Huntington’s Disease HDSA also conducts research in the search for a cure or
During this important month for Huntington’s disease, please go to HDSA.org to learn about the disease and consider making a donation to help in the fight against this horrific disease.
This morning, I’m kicking offHuntington’s DiseaseAwareness Month which is an exciting time for the Huntington’s Disease community.
The nonprofit, Huntington’s Disease Society of America (HDSA) marketing campaign to heighten awareness of this horrific disease is #LetsTalkAboutHD. The HDSA Chapters/Affiliate and Huntington’s disease families across the country will be ramping up the hashtag.
The Marin Family is on a mission to help in the fight against the incurable brain disease that stole John’s three sisters, Lora, Marcia and Cindy. John also lost his mother, aunt, two uncles and many cousins to HD. Even though John tested negative, our family is involved to keep my three sisters-in-law legacy alive. Helping others, who are going through a similar HD experience, assists my family in the healing process and calms the grief we feel in our hearts.
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.