This morning, I’m kicking off Huntington’s Disease Awareness 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.

We Can Never Lose Hope…           

I find it incredible, and encouraging, that “Huntington’s Disease” (HD) has turned up in many TV series over the past 10 years. To name just a few:  Call the Midwife, House, Scrubs, ER, Breaking Bad, Philharmonia, Without a Trace, Revenge and many more.

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.

Watch HDSA Film, Her Mother’s Daughter

We Can Never Lose Hope…….

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 

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website:  https://theresecrutchermarin.com

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.