HD Advocates

Trey Gray-A Champion for Huntington’s Disease

May is Huntington’s Disease Awareness Month!!

I love Trey Gray and I consider him a Champion for Huntington’s disease (HD) like Michael J. Fox is for Parkinson’s disease. 

HD is an autosomal dominant trinucleotide repeat disorder that causes the progressive degeneration of the basal nuclei. This degeneration leads to clinical symptoms affecting voluntary movement, cognitive impairment, and psychiatric disorders. It’s rare, genetic and fatal and has all the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time.  There is NO CURE.  Only 41,000 American’s have the disease and 200,000 live at risk and 16% of all cases are children with Juvenile HD.

Watch the Trey Gray’s video, Beating the Odds of Huntington’s disease here. 

Thank you Trey for all your advocacy work you do and have done for the HD community! #LetsTalkAboutHD     

Trey was diagnosed 19 years ago and given 10-15 years to live. He feels that his work as a professional drummer has helped him fight the disease.  He said, “I’m definitely beating the odds. And that’s a good thing. I want to be there for people to say, ‘You can do this. You can have an okay life!”    Trey Gray Foundation

Trey played with Faith Hill on her climb to fame for seven years and then played with Jewel. He has been the drummer for the popular country duo, Brooks and Dunn for many years.    

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.

 

HD Advocates

Kate Miner and Huntington’s Disease

Kate at a HDSA Convention with Michael Miller

May is Huntington’s Disease Awareness Month!

Kate Miner is from a Huntington’s disease (HD) family.  She is an actress, musician, singer and advocate for HD.  Her mother has the disease and her two (2) sisters are HD positive. Kate’s sister, Jenne Coler-Dark is on the  Huntington’s Disease Society of America (HDSA) Board of Trustees. Kate and her Hollywood friends started the HDSA HD FREEZE fundraiser and this year will be its 8th year.  Before the Pandemic, approximately $400,000.00+ was raised and the last two years it was virtual and raised approximately $200,000.00.   Thank you Kate for the advocacy work you do for the  Huntington’s disease community

May is HD Awareness Month.  Huntington’s disease is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer’s at the same time and there is NO CURE.  41,000 American’s have the disease & 200,000 live at risk.

Please consider donating to the nonprofit, HDSA, to help fight the disease by conducting research, funding HD clinics and HD support groups around the country, and many free online resources.  Since there is NO CURE, HDSA provides services/resources to help HD families have the highest quality to their lives.   

 

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

 

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…

Center of Excellence

Stanford HDSA Center of Excellence Huntington’s Disease Education Day

Dr. Sharon Sha-Stanford COE Director

To celebrate Huntington’s Disease (HD) Awareness Month, Stanford Center of Excellence is hosting a Virtual Education Day on Saturday, May 7th from 8:30 a.m. to 12 noon.  Dr. Sharon Sha, MD, MS, and her team at Stanford Center of Excellence in Stanford CA, is heightening awareness of the disease during HD Awareness Month.  She and her colleagues will present current information on Huntington’s disease to the HD community everywhere.  #LetsTalkAboutHD

Register here for the Education Day

 

AGENDA

                          


We Can Never Lose HOPE..

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

 

 

Caregiving, Grief, Love

To the Hobbs Family On The Loss Of Bryan To Huntington’s Disease

I want to express my sincere condolences to the Hobb family after losing Bryan to Huntington’s disease on April 5, 2022. The Hobb’s family has posted on Facebook their loss over losing their dad and the wife, Deb, over losing the love of her life, Bryan. They are truly a family that loved this man deeply.  

I met Deb Wilson-Hobbs in April 2017 at the Help 4 HD convention in Elk Grove, CA.  I had just published my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, and Katie Jackson, President of Help 4 HD, allowed me sell my book at the event.  (the profit I made that day from book sales, I donated to Help 4 HD)

I remember sitting at the table at the convention and Deb walking by. She stopped to look at the book and asked what it was about.  I said “it’s my husband and my love story while living at risk for Huntington’s disease (HD)”.  Story is the key word, because she looked at me and said, “why do I want to read your story when I have my own”?  Even though I said, “100% of the profit from the book sales today is going to Help 4 HD, and from then on to Huntington’s Disease Society of  America (HDSA), it didn’t matter and I totally understood where she was coming from.  

That year, I was visiting all the HD support groups in Northern California and I saw Deb again at the Chico group.  Then in 2019, Deb and her family, organized a HDSA Team Hope Walk in Chico, CA where they lived.  John and I attended to help with the event and they raised $8,000.00, I believe, and I got to meet Bryan. It was a lovely park and the local news came out and interviewed Deb and her family.  

We Can Never Lose Hope…….

Author Therese Crutcher-Marin Book Signing in Auburn CA

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

Help4HD is having a convention on April 30, 2022. in Sacramento, CA.

 

 

 

Caregiving

When Loved Ones With Huntington’s Disease Need To Be Placed

At our last HDSA San Francisco Bay Area Affiliate Board meeting, I had invited Natasha Boissier, social worker who facilitates the monthly Huntington’s Disease Society of America El Cerritos Huntington’s disease (HD) support group, to give insights into the challenges of Huntington’s Disease families.         

One of my questions was, “what is an issue that comes up over and over with the participants in the support group?”  Her answer was, “Placement when caregivers are no longer able to care for their loved one.”

There are so many facets to this issue when HD families are confronted with this dilemma.

Lora, Cindy and Marcia Marin

And I can relate to what families go through because John and I were accosted with this tough decision with Marcia and Cindy, my sisters-in-law, who had HD. 

Some of the concerns might be: (every family is different and deals with it in their own way)

  1.  How can we find the right facility?
  2.  How are we going to pay for the care in a skilled nursing home/residence care facility?
  3.  Is this the right time to move him/her?      The emotional toll on family members making this decision is difficult and heartfelt.  Some worries might be:
  1. Am I giving up on my loved one?
  2. Is death imminent at this time?
  3. Will the care be loving and kind?
  4. Will my loved one understand?
  5. Can I handle another loss?

HDSA has online support groups for caregivers specifically.  Please visit upcoming meetings here:

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

 

 

Hope

There is HOPE In The Huntington’s Disease Research Pipeline

Hello to All.  Last week there was a great webinar by Huntington’s Disease Society of America (HDSA):

HDSA & The #Huntingtons Disease Research Pipeline

Presented by Arik Johnson, PhD Chief Mission Officer & Leora Fox, PhD, Assistant Director, Research & Patient Engagement.  Watch the webinar here:  

The webinar focused on updating the clinical trials that are taking place around the world.  This picture shows the companies who are working on Huntington’s Disease (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

HD Research

Research On BRANAPLAM-An Oral Drug for Huntington’s Disease

A study recently published in Nature detailed scientists’ understanding of how branaplam, a drug originally developed for treatment of spinal muscular atrophy (SMA), may be used to treat Huntington’s Disease (HD). 

Here are the highlights

A group of researchers at Novartis and The Children’s Hospital of Philadelphia tested the drug’s effects in cells in a dish as well as in a mouse model of HD. They found that branaplam lowered levels of huntingtin protein by interfering with the message that codes for the protein, and showed early evidence that it could improve the performance of HD mice on a movement test

Finally, the researchers looked at samples from individuals with SMA who had participated in a clinical trial for branaplam, and found that huntingtin levels went down and stayed down throughout the trial.  

This oral drug lowers huntingtin protein and will now be tested in a study called VIBRANT-HD    

Go here to watch youtube on Vibrant-HD

This will be the first time branaplam is tested in adults with HD and this study will work out what dose of the drug needs to be administered to lower huntingtin. Branaplam will be given as an oral liquid, like cough medicine, that people in the trial will drink once a week.

To read more about branaplam, go to HDBuzz here

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

About Author

Always On My Mind

Author Therese Crutcher-Marin

I have to confess something I’ve never admitted to anyone besides myself.  I don’t know if it’s a woman thing or what, or that my life was drastically altered when I consciously made a decision to love a man with an unknown gene status for Huntington’s disease (HD).

A day never goes by, since November 1978, that Huntington’s disease isn’t in the forefront of my mind. (John and his three (3) sisters discovered their mother had HD)  It’s crazy because John tested negative in 2016 and knowing the cruelest disease cannot destroy my family like it did to John’s family, his mother, three (3) sisters, aunts & uncles, HD still lingers in my thoughts.

Over the past few years, I’ve thought about it and decided, the grief I carry in my heart for my three (3) sisters-in-law who died from HD complications, will always be with me.  That’s why HD never leaves my mind.  At this time in my life, I now consider it a good thing because it drives me to help families struggling with the disease and focuses my energy in helping others.  The work I do for the HD community also quiets my mind and soothes my soul.

                                 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 and :  https://theresecrutchermarin.com