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HD Awareness

HD Awareness

A New Diagnosis of Huntington’s Disease

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.   

Find a social worker in your area

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 and learn about HD:  https://theresecrutchermarin.com

January 18, 2023 by
HD Awareness

Virgin River and Huntington’s Disease

Woo, Woo!  Another TV show that is creating Huntington’s Disease Awareness!!!!

Author Therese Crutcher-Marin, HD Advocate

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.

On the season finale, he told her he was acting distant because he has Huntington’s disease, a “progressive neurodegenerative disease affecting mental abilities and physical control that normally hits sufferers between the ages of 30 and 50 years before continually worsening over a 10- to 25-year period.”

Watch Virgin River Season Four Trailer

Please help the nonprofit, Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate fight this disease by donating to fund research, two (2) HD clinics at Stanford and UCSF Medical Center, three (3) local HD support groups, online support groups, and many free online resources.

Thank you in advance.  Please Make your donation here.

We Can Never Lose HOPE…

 

July 27, 2022 by
HD Awareness

FX’s “The Old Man” TV Series on Prime and Huntington’s Disease

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…….

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

 

July 13, 2022 by
HD Awareness

What Is The Cruelest Disease on the Planet? I Say Huntington’s Disease

May is Huntington’s Disease Awareness Month   

Lora, Cindy and Marcia Marin

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 with actor Jeff Meacham. Watch Jeff Meacham talk about HD

Please help the nonprofit, Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate fight this disease by donating to fund research, fund two (2) HD clinics at Stanford and UCSF Medical Center, three (3) local HD support groups, online support groups, and many free online resources.

Thank you in advance.  Please Make your donation here.

We Can Never Lose HOPE…

May 5, 2022 by
HD Awareness

Let’s Kick Off Huntington’s Disease Awareness Month Today!

#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

NO CURE. 

Click here to find #Let’s Talk About HD Toolkit, video’s of celebrities supporting HD Awareness Month, how to make your twibbon frame, social media scripted posts you can use in your social media platforms.

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.    

To watch the short kickoff video, click here.

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.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

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

 

 

May 1, 2022 by
HD Awareness

A Play, “Red Winged Blackbird” About a Family’s Experience Living With Huntington’s Disease

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.

OnBroadwayWorld.com in San Francisco, About the Play

Performances are Thur., Fri. & Sat. 7:30 pm Sun. 2 pm  until March 20, 2022.             

Tickets $20 https://www.eventbrite.com/e/red-winged-blackbird-tickets-243788496957

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.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

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

February 3, 2022 by
HD Awareness

The Daunting 50/50 Chance of Inheriting the Huntingtin Mutated Gene

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.  

We are blessed that John tested negative in 2016.

We Can Never Lose HOPE…..

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.     Thank you.

 

November 18, 2021 by
HD Awareness

The Rarity of Huntington’s Disease in the San Francisco Bay Area

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.

 

August 19, 2021 by
HD Awareness

FREE Continuing Education-PT, OT, Social Worker, Genetic Counselor

Please visit  https://hdsa.org/healthcare-professionals-resources/  to sign up for CEU classes

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.

 

 

August 5, 2021 by
HD Awareness

What is the Huntington’s Disease Advocacy Caucus?

Jennifer Simpson, Senior Manager of Advocacy and Youth Programs at Huntington’s Disease Society of America is leading the HD Advocacy Caucus.  HDSA San Francisco Bay Area Affiliate has one board member on the Caucus who reports to the SF Affiliate Board at the monthly meeting.

Mission of the HD Advocacy Caucus:   

  • 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
  • Pass the HD Parity Act 

What are we working on:

  • 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

We Can Never Lose HOPE……

July 29, 2021 by