About Author

Therese Crutcher-Marin Huntington’s Disease Advocate

May is Huntington’s Disease Awareness Month!  #LetsTalkAboutHD

I’m a Huntington’s disease (HD) advocate and currently serve as Chair for the new HDSA San Francisco Bay Area Affiliate.   San Francisco Bay Area Affiliate 

I’m also a blogger and the author of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s, my inaugural book.  It’s an inspirational love story while living with the uncertainty of my husband, John, inheriting the fatal brain disorder, Huntington’s disease, which has no cure.  What is Huntington’s Disease?

Goodread gave my book a review and said,  “A poignant remembrance of a love forged in crisis”.   

My story is about the power of HOPE than the wages of Huntington’s. It may sound strange to most folks, but my marriage was actually fortified by its precariousness—I learned to love more deeply in the shadow of John’s mortality.  Knowing that my world could change overnight taught me to live MINDFULLY each and every day and never take John, our life, our love for granted.  Living with this huge uncertainty also taught me to FORGIVE, LOVE UNCONDITIONALLY and  NOT SWEAT THE SMALL STUFF.

“A true story that is as uplifting as it is heartbreaking”. KirkusReviews

HDSA 2019 Convention

Through this experience I learned that, We Can Never Lose HOPE

As of May 7, 2020, John and I are donating 100% of the book purchase price to the nonprofit, Huntington’s Disease Society of America (HDSA).  To date, John and I have donated over $15,000.00, the book profit, to help in the fight against Huntington’s disease.  My Author Website, where you can purchase the book, is https://theresecrutchermarin.com

Therese at the 2018 HDSA Annual Convention in LA.

                              

 

Family

Phyllis Iva (Cahoon) Marin & Huntington’s Disease

MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH  #LetsTalkAboutHD

Phyllis Marin

My mother-in-law, Phyllis Iva (Cahoon) Marin, who I never met, had Huntington’s Disease (HD).  What is Huntingtons disease

Phyllis & Cindy

John and his sisters, Lora, Marcia and Cindy don’t know a lot about her, their father never discussing her with them.  So, I too, know very little but here’s what I do know.

She was admitted to Napa State Mental Hospital around 1950 on a part time basis.  At that time she had two babies, Lora and Marcia, and she could not care for them.  The doctors did not know what was wrong with her, and because she came home, she had two more children, Cindy and John.  When Cindy was born, she was given to John’s Aunt Adeline and when John was born he was given to his Aunt Connie because Phyllis was unable to care for four children under the age of five.

Lora, Marcia & Cindy

Lora and Phyllis

She died in 1968 of strangulation as she got tangled up in the restraints the hospital had on her because her chorea was so bad.  The underlying cause of her death was stated to be Huntington’s Chorea.  History of Huntington’s Disease

This is such as sad story, but not unusual as Huntington’s disease family stories are always heartbreaking.

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

My Author Website  https://theresecrutchermarin.com

The Marin Siblings

The Marin Women & Huntington’s Disease

May is Huntington’s Disease Awareness Month and I write today to honor Cynthia Ann Marin, the third sister-in-law stolen from us by the insidious Huntington’s disease (HD).  What is HD    

Cynthia Ann Marin

Cindy moved to Canada in 1974, to get away from the smog and millions of people in California.  When I met John, she was as a dental assistant in Surrey, Canada, just above the Canadian border.  John called her a “free spirit” and the positive force in their family.  Like John, she had a wide smile and hazel eyes, and there was no denying their kinship. I always thought of her as a wander lust being because she traveled the world whenever she had enough money.

Cindy inspired me with her free spirit attitude, her passions and her focus on living life as happy as possible.  She taught me about mindfulness and living in the moment, something she was very good at.

John and I thought she would be the one sister who would miss the Huntington’s disease bullet.  Lora and Marcia had symptoms in their 30’s and when Cindy turned 41, we thought she was free of HD.  Unfortunately, that was not the case.  She began losing weight and her gait was very unsteady and she weaved when she stood still.  I cried a river when I knew the HD monster found her.  She was diagnosed in 1994.

John and I miss her everyday and wish we could have grown old together.  On June 4th, 2020 Cindy would have celebrated her 68th birthday.  #LetsTalkAboutHD   Cynthia Ann Marin’s Obituary 

We Can Never Lose HOPE…. 

Author Therese Crutcher-Marin

 

Lora, Cindy, Marcia Marin

My Author Website:  https://theresecrutchermarin.com/what-is-huntingtons-disease/

 

 

 

 

The Marin Siblings

The Marin Women & Huntington Disease

May is Huntington’s Disease Awareness Month and I write today to honor Marcia Louise Marin, the second sister-in-law stolen from us by the insidious Huntington’s disease (HD).  What is HD   

Marcia Louise Marin

Marcia was twenty-six when I met her.  She was shy but sophisticated, glowing with gentility—the first woman I knew who looked chic in jeans, maybe because she had them dry-cleaned.  Her light brown curly hair and makeup were always impeccable. 

Neither Lora or Marcia attended college; after Marcia graduated from high school, she’d gone to work in San Francisco in the typing pool at Pacific Bell.  But she was smart and ambitious, and ten years later, her title was Marketing Representative. 

In 1985, Marcia was in a terrible auto accident and retired for Pac Bell.  Her co-workers though she was drunk on the job because she fell off her high heels and she couldn’t remember things.  The next year, Marcia was diagnosed by neurologists with Huntington’s disease at the University of California, San Francisco.   

It was a tremendous blow for all of us but, unfortunately, I had seen symptoms in Marcia for about three years; twitches, losing her balance, taking falls.  #LetsTalkAboutHD

John and I miss her everyday and wish we could have grown old together.  On October 25, 2020 Marcia would have celebrated her 71st birthday.

We Can Never Lose HOPE…. 

Author Therese Crutcher-Marin

 

Lora, Cindy, Marcia Marin

My Author Website:  https://theresecrutchermarin.com/what-is-huntingtons-disease/

 

The Marin Siblings

The Marin Women & Huntington’s Disease

May is Huntington’s Disease Awareness Month and I write today to honor Loralee (Marin) Harbin, the first of my three (3) sisters-in-law stolen from us by the insidious Huntington’s disease (HD).  What is HD

Loralee Marin

Lora, one of the kindest human beings I have ever met, blessed my life for 13 years.  I met Lora when she was 28 years old and I was a young 21 year old college student.  She was a beautiful blond, striking woman with a creamy complexion, twinkling eyes, and a welcoming smile. 

Her generosity and bubbly personality drew people to her; I always felt a light radiated from her.  By day, she was a secretary at an accounting firm in Sacramento; by night, a highly creative chef.

Lora, John and Keith in our backyard in 1985. Lora was living with us.

I loved Lora, as did John, and HD had a deep psychological effect on her; HD can affect people differently.  Lora became severely depressed and self-medicated with alcohol which lead to the end of her marriage, job and life.  Lora, the oldest of the four siblings, saw her mother struggle with HD, and, once learned she might inherit the disease, it sent her over the edge. 

In 1985, she was diagnosed with cirrhosis of the liver and prescribed coumadin, a blood tinning medication.  In September 1989, she took a bad fall, had a cerebral hemorrhage and died.  

John and I miss her everyday and wish we could have grown old together.  On July 15th, 2020 Lora would have celebrated her 72nd birthday.  #LetsTalkAboutHD

We Can Never Lose HOPE…. 

Author Therese Crutcher-Marin

 

Lora, Cindy, Marcia Marin

My Author Website:  https://theresecrutchermarin.com/what-is-huntingtons-disease/

 

 

Huntington's Disease

Huntington’s Disease-A RARE Genetic Disease

Huntington’s Disease is the Cruelest Disease on the Planet!

What Is Huntington’s Disease?  HD affects the whole brain, but certain areas are more vulnerable than others. Pictured above are the basal ganglia – a group of nerves cell clusters, called nuclei. These nuclei play a key role in movement and behavior control and are the parts of the brain most prominently affected in early HD.

To watch a video on Huntington’s disease, please go to:  What is 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 usually 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 inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

There is NO CURE for Huntington’s disease or Juvenile Huntington’s disease.

Huntington’s disease organizations in the U.S.:

Huntington’s Disease Society of America http://hdsa.org

Help4HD International  https://www.help4hd.org/

We Have a Face https://www.wehaveaface.org/resources

Huntington’s Disease Foundation  https://www.huntingtonsdiseasefoundation.org/

Hereditary Disease Foundation  https://www.hdfoundation.org/

We Can Never Lose HOPE………….

#LetsTalkAboutHD         Author Website:  https://theresecrutchermarin.com

Author Therese Crutcher-Marin

HDSA Fundraising events

San Jose Virtual Team Hope 10K Run and 5K Walk for Huntington’s Disease

Please join the first San Jose VIRTUAL Team Hope 10K Run & 5K Walk on June 20th at 10 a.m. (PST), a fundraiser for the nonprofit, Huntington’s Disease Society of America (HDSA).

The Coronavirus has impacted our daily lives and interfered with many fundraising activities, but the Huntington’s disease community is resilient and we carry on, changing our events so we can continue to provide local resources to help HD families in the San Francisco Bay Area. 

The VIRTUAL Run and Walk is FREE to Join.  Donations are very appreciated.

To sign up, visit: HDSA San Jose Virtual Fundraiser

We Can Never Lose HOPE….     #LetsTalkAboutHD

Therese-Author

May is Huntington’s Disease Awareness Month

 

Facts about Huntington’s disease:

1. 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, usually during their prime working years, and has no cure … yet.

2.  Today, there are approximately 41,000 symptomatic Americans living with Huntington’s disease and more than 200,000 at-risk of inheriting HD. 10% of all HD cases are children with Juvenile HD.

3.  Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. 10% of all cases are Juvenile HD  juvenile-onset-hd/

For more information about Huntington’s disease, click here:  http://hdsa.org

We Can Never Lose Hope…

Kate Miner, her mother & 2 sisters.

Kate Miner, actress, musician, and HD advocate comes from an HD family. To read the article about her family, visit.   Kate Miner-I come from an hd family

Trey Grey, drummer, HD gene positive and HD advocate shares his story.  https://grottonetwork.com/navigate-life/health-and-wellness/huntington-disease-story/

Author Therese Crutcher-Marin

My author website:  https://theresecrutchermarin.com

Taking Care of Yourself

Be Gentle With Yourself During the Pandemic

During this unprecedented time, we need to be gentle with ourselves.  We have never experienced a pandemic and it has caused us to suffer many losses that we don’t even recognize.

Please take time to ponder about your losses.  Having to shelter in place, we have a loss of community because we’re working from home and not going to work and interacting with co-workers.  We’re not going to the gym, going out to dinner with family and friends.  When we acknowledge these losses we must be gentle with ourselves. Stress and coping with the coronavirus from the CDC

Author Therese Crutcher-Marin, HD Advocate

Grief is the normal process of reacting to a loss. The loss may be physical, social, or occupational. Emotional reactions of grief can include anger, guilt, anxiety, sadness, and despair.  Grief is expressed in many ways and it can affect your emotions, thoughts, beliefs, physical health, sense of and identity and relationships.

We Can Never Lose Hope…

My author website where my blog is generated from https://theresecrutchermarin.com To receive my weekly blog, go to the website and signup. I’ll send you the first chapter of my nonfiction book, Watching Their Dance, a poignant remembrance of a love forged in crisis.

 

 

May is HD Awareness Month

Let’s Talk About Huntington’s Disease

HELP US TURN UP THE GLOBAL VOLUME

ON HD AWARENESS!

#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD…It can be a video, a photo or a written story – Huntington’s disease (HD) impacts every family differently and it’s time the world knows our story.  For info on HD click here

Post videos, stories & photos to social media using #LetsTalkAboutHD to educate the world about the devastating impact that HD has on families.

#LetsTalkAboutHD Resources

http://hdsa.org/this-may-letstalkabouthd/

 

We Can Never Lose Hope….

Therese’s Author Website:  https://theresecrutchermarin.comWatching the Dance Huntingtons Disease