HD Community

Marisol Guzman Joins San Francisco Bay Area Chapter As A Freelance Writer Volunteer

The San Francisco Bay Area Chapter has a new volunteer, a freelance writer, Marisol Guzman, who is interviewing local families and writing their Huntington’s disease (HD) story. She then submits the article to media outlets in the Bay Area.  This is a new outreach project for the Chapter, human interest stories, to heighten awareness of this devastating disease.  The article is on my blog because it’s important to have the article appear on the Chapter’s social media platforms.   The following is Marisol’s first article.

    The Biggest Gamble by Freelance Writer, Marisol Guzman

Therese had life planned out. She couldn’t wait to graduate from college, get a job, marry John Marin, and start a family. John and his sisters Lora, Marcia, and Cindy were all close in age. Therese and the Marin siblings enjoyed partying and being young. The life ahead of this close-knit family was bright.

Phyllis Marin

However, Therese often wondered what had become of John’s mother: Phyllis Iva. None of the siblings could remember why mom was in a state hospital and what led to her young death. The father refused to share the big family secret. Therese had no idea how this family secret would be akin to opening Pandora’s box.

“When I first heard of Huntington’s Disease, I didn’t know what it was but I knew it was bad,” Therese recalls. The Marin sisters, John and her gathered to discuss their mother’s cause of death: complications from Huntington’s.

Huntington’s Disease (HD) is “a progressive degeneration of nerve cells in the brain that affects movement, cognitive functions, and emotions.” HD is often described as having the symptoms of Parkinson’s, Alzheimer’s and ALS simultaneously that strikes young. It’s a rare genetic disease that currently has no cure.

Therese was internally conflicted. Do I start over and risk losing the love of my life or do I stay and take a gamble on a genetic disease impacting my family? Therese deliberated on her decision. With hope and naivete, Therese decided to stay with John. Together they lived their lives as fully as possible before HD’s unpredictability interrupted their plans.

Lora was the oldest of the Marin children. At age five, she stepped up and became a mother figure to her siblings during her mom’s absence. HD psychologically affected Lora which manifested into deep depression that led to self-medicating with alcohol. This maladaptive coping behavior led to a decline in her marriage, and at 41 she died of a cerebral hemorrhage.

Marcia was the second oldest Marin sibling. The AT&T professional was a stylish and unassuming woman. Things started taking a turn when Marcia began to wobble in her high heels at work. Her coworkers assumed that she was coming to work drunk.  In Marcia’s case, HD manifested itself with involuntary movements, unsteady gait, swallowing problems.  Marcia stayed independent on her HD journey with help from Therese managing her care.  Marcia died at 49 of a heart event.

Cindy was the second youngest in the family. Therese describes Cindy as a free spirit and   quintessential flower child. Cindy led an athletic and adventurous lifestyle full of kayaking and backpacking through countries around the world. Through her active lifestyle, Cindy was able to slow down HD and didn’t start noticing symptoms until her early 40s. As HD progressed, she developed dystonia, difficulty swallowing and cognitive decline.  Cindy died at age 54 of cardiovascular complications.

John and Therese watched his older sisters lose their battles to HD. There was unspoken anxiety of not knowing if John would be next. A test for HD was not developed until 1993. In 2016, John tested to know for certain whether HD would affect his two children as they were starting to build lives of their own. The family breathed a sigh of relief when John received a negative test result.

Therese had a hard time unpacking the 24 years of grief and it wasn’t until she poured her sadness into her book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s that the hole in her heart grew smaller.

Although HD still has no cure, Therese holds hope in her heart that she will see a cure in her lifetime.  For now, Therese is comforted knowing there are many pharmaceutical, biotech and therapeutic companies conducting clinical trials on drugs that will manage HD symptoms allowing HD patients to have a higher quality of life.

Therese Crutcher-Marin is President of HDSA San Francisco Bay Area Chapter, a Huntington’s disease advocate, and author and a blogger.  Visit theresecrutchermarin.com

 

Fundraising

HDSA San Jose Team Hope Run/Walk Raises $22,300.00

The 6th Annual San Jose Team Hope 10K Timed Run & 5K Walk was an awesome event raising approximately $22,300.00!!!!   

The San Francisco Bay Area Chapter couldn’t have done it without a team effort by all the volunteers who helped with outreach for sponsors, donations for the silent auction and raffle and day of event helper.  Thank you to all who made it a success!

                                           We Cannot forget our Sponsors!  Thank you so much! 

We Can Never Lose HOPE…….

 

 

Resources

What Programs/Services Are Supported From Donated Funds Raised at the San Jose Team Hope Run/Walk

Of course, folks want to know how their donated dollars are spent by the nonprofit, Huntington’s Disease Society of America (HDSA).  Donors to HDSA, desire to know that their money is helping HD patients/families across the U.S.

The pictures below are the programs and services provided by the HDSA Chapters and Affiliates fundraising efforts.  (approximately  55  Chapters/Affiliates)

The money the HDSA San Francisco Bay Area Chapter raises is from two fundraisers, San Jose and San Francisco Team Hope Walks.

Locally, the SF Chapter supports: two in-person monthly support groups facilitated by social workers in  Palo Alto and Berkeley and we support all the programs/services in the pictures. They are free to HD families/patients across the U.S.

The SF Chapter now has a part time social worker, Satve Ilango.

Direct line: (650) 587-0988

Email: [email protected]

We Can Never Lose HOPE…

 

 

 

 

 

 

 

 

Resources

What Program/Services Are Supported From Donated Funds Raised at the San Jose Team Hope Run/Walk

Of course, folks want to know how their donated dollars are spent by the nonprofit, Huntington’s Disease Society of America (HDSA).  Donors to HDSA, desire to know that their money is helping HD patients/families across the U.S.

The pictures below are the programs and services provided by the HDSA Chapters and Affiliates fundraising efforts.  (approximately  55  Chapters/Affiliates)

The money the HDSA San Francisco Bay Area Chapter raises is from two fundraisers, San Jose and San Francisco Team Hope Walks.

Locally, the SF Chapter supports: two in-person monthly support groups facilitated by social workers in  Palo Alto and Berkeley and we support all the programs/services in the pictures. They are free to HD families/patients across the U.S.

The SF Chapter now has a part time social worker, Satve Ilango.

Direct line: (650) 587-0988

Email: [email protected]

We Can Never Lose HOPE…

 

 

 

 

 

 

 

 

Fundraising

Help Raise Funds for Huntington’s Disease Research

The 6th Annual HDSA San Jose Team Hope 10K Timed Run & 5K Walk is Saturday, June 15th, 2024 at Campbell Park in Campbell.  The HDSA SF Bay Area Chapter is working hard to raise $28,000.00 for Huntington’s disease research. Please  open  your  hearts  to  us battling  this  horrific  brain disorder  with  NO CURE.

Registration and check in starts at 9 a.m. Saturday morning.  There will be breakfast items, coffee, fruit, water and sports drinks.  Also, we will have great raffle items and silent auction items.

Timed runners will start at 9:30 and walkers at 10:00.  Wear your Team Hope Walk t-shirts and run/walk in solidarity with the Huntington’s Disease South Bay community.

Last year we had a lot of fun, a lot of tears and hugs as the participants run/walk to fight Huntington’s disease.  2023 Pictures:

      

 

We Can Never Lose HOPE…..  

I’m a Huntington’s disease (HD) advocate, President of the HDSA San Francisco Bay Area Chapter, a blogger and an author.  Visit my website  https://theresecrutchermarin.com

 

 

 

 

 

 

May is HD Awareness Month

#LetsTalkAboutHD And Living At Risk

May is Huntington’s Disease Awareness Month

While my personal Huntington’s disease (HD) journey may be unique, it reflects the complex emotional and psychological aspects of living with the fear of Huntington’s disease. This disease not only affects individuals but also impacts entire families.

Though I took the biggest gamble of my life and married John, who had an unknown HD gene status, for me, it was difficult living with the danger.  John did not want to be tested because we were looking at the HD face of his three (3) sisters for 24 years.  He told me, “I want to live with the HOPE that I don’t have it”.

Watching Their Dance

You can read my HD journey, with John, in my book, Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.

Seeking professional guidance was key for me managing the mental and emotional toll of living with this fear.

Huntington’s Disease Society of America (HDSA) can help you find a local social worker for you to reach to.

We Can Never Lose HOPE…..

I’m a Huntington’s disease (HD) advocate, President of the HDSA San Francisco Bay Area Chapter, a blogger and an author.  Visit my website  https://theresecrutchermarin.com

May is HD Awareness Month

Did You Know Huntington’s Disease Has NO CURE?

May is Huntington’s Disease Awareness Month

Did you know there is NO CURE for Huntington’s disease?

Huntington’s disease is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously.

The Huntington’s Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, HOPE for tomorrow for people with Huntington’s disease and their families.

Please go to Huntington’s Disease Society of America to learn more about Huntington’s disease and join the fight. #LetsTalkAboutHD

Click here to make a donation to the nonprofit, HDSA  We Can Never Lose HOPE…..  

I’m a Huntington’s disease (HD) advocate, President of the HDSA San Francisco Bay Area Chapter, a blogger and an author.  Visit my website  https://theresecrutchermarin.com

Hope, Quality of Life

Living Your Best Life with Huntington’s Disease Presented By Dr. Jiao

FREE VIRTUAL WEBINAR: THURSDAY, MAY 23RD @ 7PM PT

Join the HDSA San Francisco Bay Area Chapter in welcoming Dr. Jocelyn Jiao, MD (Clinical Assistant Professor, Neurology & Neurological Sciences Clinical Assistant Professor, Medicine – Primary Care and Population Health, Stanford) as she discusses Palliative Care and its role in living with Huntington’s Disease. #LetsTalkAboutHD

Therese Crutcher-Marin, President of the HDSA SF Bay Area Chapter will introduce Dr. Jiao and share a video of her presentation of, Living Your Best Life With Huntington’s Disease, will be shown.

Register for the webinar here

After the presentation, Dr. Jiao will be available to answer questions.

We Can Never Lose HOPE…..  

I’m a Huntington’s disease (HD) advocate, President of the HDSA San Francisco Bay Area Chapter, a blogger and an author.  Visit my website  https://theresecrutchermarin.com

HD Clinical Trials

Huntington’s Disease Studies and Clinical Trial Updates by Dr. Dietiker of UCSF Medical Center

Huntington’s Disease Studies and Clinical Trial Updates

On Tuesday, May 14, 2024 at 7 p.m., Therese Crutcher-Marin, President of HDSA San Francisco Bay Area Chapter, will welcome participants to the webinar.

Dr. Cameron Dietiker will present information on Huntington’s Disease Studies and Clinical Trials Update as of Dec. 2, 2023.   Dr. Dietiker, MD at University of California, San Francisco Medical Center and team member at UCSF Huntington’s Disease Clinic. #LetsTalkAboutHD

Dr. Dietiker will be available for questions after the presentation.

Register here:  https://w.ringcentral.com/register/bc9a8d06/5933291b/index.html

We Can Never Lose HOPE…..  

I’m a Huntington’s disease (HD) advocate, President of the HDSA San Francisco Bay Area Chapter, a blogger and an author.  Visit my website  https://theresecrutchermarin.com

May is HD Awareness Month

#LetsTalkAboutHD

#LetsTalkAboutHD is a social media initiative during Huntington’s Disease (HD)Awareness Month in May to encourage families to share their experiences with HD… Post videos, stories & photos to social media using #LetsTalkAboutHD to educate the world about the devastating impact that HD has on families. 

Lora and Phyllis

I wrote the Marin (Cahoon) HD story in the memoir,

Phyllis & Cindy

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying Into a Family At Risk for Huntington’s.  I wanted the world to know what HD families deal with for generations and the stress of living at risk, emotional pain, financial hardship HD causes, and the grief felt for years watching a loved disappear.

We Can Never Lose HOPE…..

I’m a Huntington’s disease (HD) advocate, President of the HDSA San Francisco Bay Area Chapter, a blogger and an author.  Visit my website  https://theresecrutchermarin.com