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……

HD Advocates, HD Awareness

Heightening Huntington’s Disease Awareness in the San Francisco Bay Area

The Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate is conducting a new outreach strategy in the greater San Jose area.   Huntington’s  disease (HD),  a rare,  fatal,  genetic brain  disorder,  is  not  known  by  most  people.  If  they  have  heard  of  HD,  they  don’t  know the  details  of  how  it  affects  a person  and  their  family  for  generations.  

HDSA Affiliate volunteers, Uma, David, Jay and myself are manning a table at the Campbell Farmers Market on Sundays from 9 am-1 pm spreading the word about the Cruelest Disease on the Planet; Huntington’s disease, and there is NO CURE.

41,000 American’s have the disease and approximately 200,000 live at risk of inheriting the mutated huntingtin gene that causes the disease.  Of those 41,0000 symptomatic Americans, 16% are children with Juvenile Huntington’s disease.  

By our outreach efforts, we hope to reach Bay Area folks who are struggling with HD and inform them of the services available to their family.  

We Can Never Lose HOPE…

Author Therese Crutcher-Marin

Please make a donation to the nonprofit, Huntington’s Disease Society of America (HDSA) and  help us in the fight against HD.

HD Advocates

Huntington’s Disease Champions

There are many Huntington’s disease (HD) champions among us and many that are gone from our sight; some are celebrities, some everyday people who are tirelessly heightening awareness of HD.           

San Francisco Bay Area Affiliate Volunteers

Some champions among us are:  Musician Kate Miner, Pitcher Joe Smith, Journalist Charles Sabine, Scientist Nancy Wexler, movie producer Chris Furbee, Dr. Ed Wild, Dr. Jeff Carroll, Coach Mark Helfrich, Health & Fitness Guru Shana Verstegen, Louise Vetter and Drummer Trey Grey. (There are others that belong on the list)     Those gone from our sight but not gone from our hearts are Woody & Marjorie Guthrie, Dr. George Huntington. 

Lora, Marcia & Cindy

My sisters-in-law, Lora, Marcia and Cindy, are my  champion’s as they are the driving force behind what I do for the Huntington’s disease community.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. 

The nonfiction book I penned, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on my author website  https://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from my book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).

 Subscribe to Therese’s Blog via Email

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Love

Remembering LoraLee (Marin) Harbin

Today, July 15th, is Loralee (Marin) Harbin’s, my dear sister-in-law, birthday. As a Rememberer, I write this blog to honor her and for the world to know what a loss she was to our family and friends.

Lora was taken from the Marin family at a young age of 41.  Lora had Huntington’s disease as did her mother, Phyllis (Cahoon) Marin.  I am blessed to have had her in my life for 12 years, and unfortunately, my children were too young to have known this wonderful aunt of theirs.

A light radiated from Lora and her smile made them everyone she came in contact with comfortable.  She was the kindest, most giving, loving person I have ever known.

 

  Happy Birthday, Lora……………John, Keith, Vanessa and I miss you and you will live forever in our hearts.

                                           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.

 

 

 

 

 

HD Awareness

What Disease is the Cruelest on the Planet?

Author Therese Crutcher-Marin

Huntington’s Disease has been described as the worst disease known to man, and also known as “The Devil’s Disease“.

Lora, Cindy and Marcia Marin

I call it the cruelest disease on the planet having lost my three sisters-in-law and mother-in-law to Huntington’s disease.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has  NO  CURE.  HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene.  Death usually occurs 10-20 years after disease onset. During the progression of the disease, movement disorders typically occur. The movement disorders include ~ chorea, dystonia, and tremors.

Today, approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

Many describe HD as having the symptoms of ALS, Parkinson’s and Alzheimer’s – simultaneously.

Click here for more information on Huntington’s disease and find other support here: Huntington’s Disease Clinics which are called HDSA Centers of Excellence, support group meetings and online support groups, contact info on a HD social worker, and HD events in your area.

We Can Never Lose HOPE…….

Please make a donation to the nonprofit, Huntington’s Disease Society of America (HDSA) and  help us in the fight against HD.  

Love

Loving Deeply In The Shadow of Huntington’s Disease

Forty years ago, I chose to be with John despite his unknown gene status for Huntington’s disease (HD). This may sound a little crazy, but living at risk for the cruelest disease on the planet with John, for 38 years, and the precariousness of the situation, fortified my marriage.  I say this because knowing my world could change over night, and steal what I loved most, made me appreciate John everyday, never taking him or our relationship for granted. Living_at_risk_for_HD_  

And, I learned to love more deeply in the shadow of John’s mortality.

John and I rarely fought, we had some disagreements, but never got mad at each other.  Life is just too short not to forgive because we are all human and we all make mistakes.

The things I learned through this journey with Huntington’s disease looming over us, was to appreciate what I had in my life at that moment; I lived mindfully.  Also, John and I also didn’t put off the things we wanted to do and we able to create so many wonderful memories together with our children. 

Author Therese Crutcher-Marin

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on my author website/HD Advocate & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from my book is being donated to the nonprofit, HDSA.

 Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to Therese’s blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.

Forgiveness

Unconditional Love and Forgiveness

Lora, Cindy and Marcia Marin

After many years of reflecting on the lives of Lora, Marcia and Cindy, my three sisters-in-law who died from Huntington’s disease (HD) complications, one trait the four Marin siblings had in common  (I must include my John in this statement)  was their capacity to love unconditionally.  Especially when they graced their love on their father, John Marin Sr. who was an absent, abusive father.       

These four siblings never passed judgement and accepted others as they were.  I thank Lora, Marcia, Cindy for allowing me to witness their acts of kindness and teaching me how to be more forgiving, because to love deeply, one must forgive.  Loving unconditionally is just one of the many attributes I witnessed from these three wonderful ladies.

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 Author/HD Advocate website:  https://theresecrutchermarin.com 

Read about the struggles with living at risk for a deadly, rare, fatal brain disorder with NO CUREWatching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is  available on many book websites.  https://www.amazon.com/author/theresecrutchermarin

 

Thankful

John’s Genetic Test for Huntington’s Disease

In late November, 2015, John shared with our children and their spouses, that he was going to have the genetic test for Huntington’s disease (HD) after living for 37 years AT-RISK.   He felt he owed it to his children.  We made an appointment at the UC Davis Center of Excellence in Sacramento and spoke Dr. Vicki Wheelock and Mara Sifry-Platt, genetic counselor.    HOPE was more important to me now than it had even been.

We had to wait six weeks to find out John’s test result and I was thankful it was during the Christmas Holiday which was busy and festive, and kept my mind occupied.  It was when I was lying in bed trying to go to sleep that my mind would not be still.   Click here to watch a video on Mara talking about predictive testing.                                                                 

On January 8th, 2016, John and I held hands as we waited in the patient room.  When Dr. Wheelock entered and sat down, my heart was beating so fast I felt dizzy.  I could tell John was nervous, squeezing my hand and taking deep breathes.  Mara, was also in the room as Dr. Wheelock asked if we wanted to hear the result.  I looked at John, and he nodded.  

Dr. Wheelock shared the result which was negative.  My shoulders dropped and my hand covered my mouth.  I have not seen John cry more than two times during our life together, and this was the third time!  We are so grateful and blessed and now our children do not live in the shadow of HD.

Locations in the San Francisco Bay Area Locations that test for HD.  Kaiser Permanente San Jose  

Stanford Center of Excellence and UCSF Center of Excellence

We Can Never Lose HOPE…

 

 

HDSA San Francisco Bay Area AFFILIATE

HDSA San Francisco Bay Area Affiliate Receives An Award

Author Therese Crutcher-Marin, HD Advocate

I wish to thank the Board members of the Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate for their hard work and dedication during the 2020 COVID-19.

The SF Affiliate officially began operating January 2020 and even with the pandemic, the Board stepped up and began several outreach projects, recruited valuable volunteers and organized two (2) Virtual Team Hope Walks.  Because of their relentless commitment, at the 36th HDSA Annual Convention, the Affiliate received the HDSA Affiliate of the Year Award.

As the Chair for the SF Affiliate, I’m privileged to work side by side these awesome volunteers.  You can see all the HDSA awards by visiting https://hdsa.org/about-hdsa/annual-convention/

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.

 

Love

Who Is Your Touchstone?

One of my favorite songs is The Wind Beneath My Wings by Bette Midler; from the movie Beaches. The song depicts the relationship between two woman, Bette Midler and Barbara Hersey, and their undying friendship, love and devotion despite their differences. 

Whenever I hear it on the radio, I think of my husband, John Anthony Marin, my touchstone, my ever positive influencer in my life, the most resilient person I know, who kept me from shrinking into the depth of despair as each sister-in-law left this world because of Huntington’s disease (HD).

John was the wind that supported me as we traveled through turbulent times in our life; he is still my biggest supporter and I would stumble and fall without him.  We now travel together into a smooth, calm breeze of peace and tranquility. 

So I ask you.  Who is the wind beneath your wings?  

My memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on my author/HD advocate website  https://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from my book sold in the U.S. will be donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  Make a donation to help fight HD @ HDSA.

 Subscribe to Therese’s Blog via Email

 Enter your email address to subscribe to my blog and receive notifications of new posts by email and receive the first chapter of her book, Watching Their Dance, via email.