Resources

Virtual Resources for Huntington’s Disease Families

As we shelter in place to fight the Coronavirus, I’m sharing the online tools and virtual resources the Huntington’s Disease Society of America (HDSA) has available on their website.  The resources are free to everyone.  See http://hdsa.org for additional information.

If you’re unable to view the video, go to:  https://youtu.be/km2bJhZJoyQ

Disability Chat with Allison Bartlett and How to Sign Up to Chat:

Online Support Group Schedule & How to Sign Up for a Session: 

Telehealth and How to Make an Appointment with a therapist Licensed in your State

We Can Never Lose HOPE………..

 

Huntington's Disease, Watching Their Dance

Is This A Bad Play?

Lora, Cindy and Marcia Marin

This is the last emotional scene from the book, Watching Their Dance, when John’s three sisters tell us the family secret; their mom had Huntington’s disease. 

At that time, John and I were young, 21 and 22 years old.  We were both working our way through college, due to graduate in seven months and start a life together.

This news scared me, like I’ve never been scared before, and I realized this horrific disease would now relentlessly haunt the four Marin siblings.  In 1978, no test was available, or therapy or cure.           

Chapter 1 page 17, second paragraph:

“Stirring the ice with my fingers, I stared at the russet liquid as my racing heart slowed down.  I felt as if I had just watched a scene from a bad play and the curtain had come down with a thud.  Needless to say, I was glad it was over and the actors were back to their usual selves, but my anguish remained.  I had no idea why the sisters had sought this information now.  So many question were popping up in my mind, and unfortunately, they would remain unanswered, because the final act of this play was unscripted, the starring actors unknown.  Happy or tragic, the ending would play out only over time.”

We Can Never Lose HOPE……

To read the first chapter of the book, please go to my author website, https://www.theresecrutchermarin.com  and sign up to receive my weekly blog and I’ll email the first chapter to you.

Author Therese Crutcher-Marin

 

 

Storytelling, The Non Fiction Book

Swirling Emotions After Learning the Marin Family Secret

I‘m continuing with the scene from Watching Their Dance, when Lora, Marcia and Cindy told John and I the family secret; their mother had Huntington’s disease.

This is the reaction I had when the Marin ladies gave us the news.

Page 16, sixth paragraph:

“I leaned back on the couch and took a deep breath as I felt this compelling information slowly registering in my consciousness, alerting my senses to danger.  A struggle crept into my mind, a primal instinct screamed, Run, but my heart said, Stay. I felt as if I were being pulled one way and then another, back and forth, back and forth.”

To read the first chapter of the book, please go to my author website, https://www.theresecrutchermarin.com  and sign up to receive my weekly blog and I’ll email the first chapter to you.

We Can Never Lose HOPE……….

 

 

 

About Author, Huntington's Disease

Unlocking the Marin Family Secret

When Lora, Marcia and Cindy, John’s sisters found out the family secret, their mother, Phyllis, had Huntington’s disease (HD), I remember being afraid but I didn’t know what I was afraid yet.

“Yet” is the key word. I’d never heard of HD or seen anyone with the disease, but by the look on the three women’s faces that day, I knew it couldn’t be good. The Marin Family Secret was about to be unlocked.

Phyllis Marin

This is the scene from my book, Watching Their Dance when the three Marin sisters told John and me what they had discovered.

(Chapter 1 page 14)

Cindy speaking: 

“The three of us visited Aunt Evelyn last week,” she began. 

“It’s been years since we’d seen her, and we decided it was time to reconnect.”  She looked at me.  “She’s our mother’s younger sister; she lives about an hour south of Sacramento, in Galt. 

We learned from her that we have a genetic disease in our family, called Huntington’s disease. 

Our mother, Phyllis, and three of her sibling had it.”  She paused a moment to let the words sink in. 

“We rarely saw our mother’s siblings after she died, so we were unaware that they had suffered from it.  It’s an inherited disease that causes the progressive breakdown of nerve cells in the brain.  It affects muscle coordination and leads to behavioral symptoms and, um, mental and physical decline.”

Needless to say, this conversation that took place on a cold November day, changed my life as well as the four Marin siblings lives.  For the next six months, I began a period introspection, self analysis of whether I could live with this HUGE UNCERTAINTY in my life and whether John and my love was strong enough to bear it.  

Sign up for my blog via email and I’ll send you the 1st Chapter of my book.  https://theresecrutchermarin.com/

We Can Never Lose HOPE…….

Author Therese Crutcher-Marin Book Signing in Auburn CA

Therese at the 2018 HDSA Annual Convention in LA.

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK in July 2017

 

 

 

 

 

 

 

 

100% of the profit from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America.  To date, I’ve gifted approximately $15,000.00.

 

 

 

 

 

On Writing, The Non Fiction Book

Three Years Ago My Dream Came True

Today, three (3) years ago my dream was fast approaching to become a reality; no longer did I have a manuscript, now I had a book (a proof copy of the book) that I could hold in my hand.  I remember going to the mailbox and taking the package out of the mailbox, walking back into the house, my hands shaking, afraid to open it, and my heart pounding in my chest.  John said, “Aren’t you going to open it, Therese?”  It was surreal holding Watching Their Dance and reading the words I had labored over for so many years.   Amazon http://amazon.com/author/theresecrutchermarin

For seven years, I’d traveled on an unfamiliar road that excited me; learning and improving my writing skills, finding camaraderie/support in fellow writers at Gold Country Writers Club and Sacramento Suburban Writing Club, and joining a critique group for three (3) years; I had to put on my tough skin to listen to their comments.

              

In 2015, after attending the San Francisco Writer Conference for the second time, I was ready to work with an editor to teach me techniques to improve my work.  Editor, Pam Feinsilber, taught me so much during those two years.  Many folks who have read the book have shared that they couldn’t put it down.

Pam’s Linkedin profile https://www.linkedin.com/in/pamela-feinsilber-08855b5/

On the March 10th blog, I’ll share my excitement on receiving the first order of my books!!

We Can Never Lose HOPE……

 

The Marin Siblings

Honoring Three Women Struck Down by Huntington’s Disease

Lora, Cindy and Marcia Marin

Lora, Cindy, Marcia Marin

Lora, Marcia and Cindy Marin, my three (3) sisters-in-law, who died from Huntington’s disease (HD) complications, are never far from my thoughts.

I’m a HD advocate for many reasons and first and foremost it is because I want to honor these three (3) beautiful women whom I loved.  John, my husband, and I miss them everyday and wish we all could have grown old together and celebrated many more Christmas’s, Thanksgiving’s and birthday’s.

HDSA 2019 Convention

Huntington’s disease, a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s, and Alzheimers at the same time.  This disease has no cure and devastates families for generations.  It’s an insidious disease because when a parent has the disease, every child has a 50/50 chance of inheriting the mutated HD gene that causes the disease.  More about Huntington’s disease

I’m a volunteer for Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of HD families.  I’m currently the Chair for the HDSA San Francisco Bay Area Affiliate and I work with a fabulous team of HD advocates to heighten HD awareness and raise money to fund local services like HD support groups, the Centers of Excellence at Stanford University and University of California, San Francisco, HD Education Days and research.  http://hdsa.org

https://sanfrancisco.hdsa.org/

Being involved has given me peace and soothed my soul by doing this important work in memory of Lora, Marcia and Cindy.

Benefits to volunteering:  https://nonprofithub.org/featured/8-long-term-health-benefits-of-volunteering/

We Can Never Lose HOPE………………………..

 

About Author

“Watching Their Dance” Took 2nd Place on TaleFlick.com

Thank you to everyone who voted last week for Watching Their Dance, a memoir and a love story, to have a shot at being made into a MOVIE. It was the 1st round of competition.

I subscribe to a website, TaleFlick http://TaleFlick.com  created by Hollywood producers, where my book is looked at by those who Make MOVIES.

The book came in 2nd place which is not too disappointing to me. It was out of 40 books. I was happy to be selected for the contest & it gave awareness to Huntington’s disease.

The book can be purchased here on my website, a hard book or an epub file. Shipping is free  https://theresecrutchermarin.com/purchase-book/

It’s also available on Amazon around the world.  amazon.com/Watching-Their-Dance-Marrying-Huntingtons   Amazon.com/author/theresecrutchermarin

It can be found on many other book websites, like B&N, and available in Kindle, Nook, Kobo, ibooks. .barnesandnoble.com/w/watching-their-dance-therese-marie-crutcher-marin/1126082854

Author Therese Crutcher-Marin

100% of the profits from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  To date, I’ve donated $15,000.00 to HDSA, the profits since I published.

Please read the wonderful Reviews I received on the book.  Every author hopes to receive the positive reviews by trusted organizations; KIRKUS Reviews, Goodreads, Book Life:  https://theresecrutchermarin.com/goodreads-review/

We Can Never Lose HOPE…

 

 

A Love Story

Make “Watching Their Dance” Memoir into a MOVIE

My book, Watching Their Dance, a love story while living in the shadow of Huntington’s Disease,  is in a strong 2nd place in a contest on TaleFlick.com that allows the public to vote on which stories they want to see adapted to the screen.
 
Please VOTE Click here to vote!!
A movie would give Huntington’s disease (HD)  so much exposure.  HD is a rare, fatal, genetic brain disease that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is adult HD and Juvenile HD and there is NO CURE.  For more info on HD, visit http://hdsa.org
TaleFlick.com is holding a contest that allows the public to vote on which stories they want to see adapted to the screen.
HD Awareness

Turn Your Book into a Movie Voting Continues 22 More Hours

The contest continues!  You have another 22 hours to vote for Watching Their Dance.

TaleFlick.com hosts a contest that allows the public to vote on which stories they want to see adapted to the screen.   

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is one (1) in 40 books competing.

Please VOTE for my book.  It will give Huntington’s Disease great exposure, if I win. For information on Huntington’s disease, please visit http://hdsa.org

VOTE HERE:  https://taleflick.com/pages/discovery?app_data=entry_id%3D241154115%26referer_override%3Dhttps%253A%252F%252Fwww.facebook.com%252F&fbclid=IwAR3XP2nEDEXt1aEoWXUXsXoKhW5vtLKpmohFoUJ7Sp2hDnB3kX8AWdiQsOs

HDSA 2019 Convention

Therese at the 2018 HDSA Annual Convention in LA.

 

 

 

A Love Story

To The One I Love John Anthony Marin

John & our children & their spouses

Valentine’s Day is upon us and I have had 44 years to celebrate this day with him.  I’m thankful for John Anthony Marin, the love of my life, my husband, lover, father of my children, confidant, touchstone and the kindest, most honest man I’ve ever known.

In 1979, I decided to marry John, even with his unknown gene status, because I couldn’t fathom life without him.   I embraced the uncertainty which enriched my life and fortified my marriage.

Each year, Valentine’s Day validated the love John and I shared.  I secretly rejoiced in enjoying another year with John with no Huntington’s disease symptoms.  Read about our love story:  https://theresecrutchermarin.com/my-story/

This day also reminded me to stay vigilant, living mindfully, not sweating the small stuff, never taking John for granted and the wonderful life we had together.

I have never regretted marrying John, even with the heartache we have experienced with the loss of his three (3) sisters to Huntington’s disease. We are blessed that John tested negative in 2016 for the Huntington’s disease mutated gene.

Take a look of the history of Valentine’s Day and enjoy the day with the one you love.  https://www.history.com/topics/valentines-day/history-of-valentines-day-2