Browsing Tag

#WatchingTheirDance

HD Advocates

The 2019 Boston HDSA Annual Convention

Every year, the HDSA Annual Convention keeps growing and I’m always surprised at the number of first time attendees. I find this fact wonderful since those first timers find support, information, and more importantly, they find a welcoming community where they never have to feel alone again. https://hdsa.org/about-hdsa/annual-convention/

The 2019 HDSA Convention kicked off with a Team Hope Walk on Thursday evening which always gets folks fired up!

  

I’ve now attended three (3) HDSA Conventions; 2017-Chicago, 2018-Los Angeles and Boston.

In 2017, John and I were on a three-month Midwest book tour in our RV, as I had just published the nonfiction book, Watching Their Dance.  I sold 63 books at the convention.

James and Mel Miller at the 2017 HDSA National Convention in Schaumburg IL.

2018 HDSA Convention

2018 Left to right: Anna Canoni, Nora Guthrie, Louise Vetter & Dr. Nancy Wexler

The next year, 2018, the convention was in Los Angeles, and we drove our RV and parked in Dockweiler State Beach for four nights. The beach was only four miles from the Convention Center but it took me 45 minutes to get there.  Traffic was crazy! I sold 55 books that year.

This past weekend, we flew to Boston and while I was busy all day with sessions, John found a coffee shop, a newspaper, a sports bar for lunch, which made his day enjoyable.

I was honored to receive the HDSA “Woody Guthrie Advocacy Award”, and will continue to advocate and help in the fight against Huntington’s disease.  I’m humbled that HDSA felt I was worthy of this award.

Thank you Huntington’s Disease Society of America (HDSA) for guiding the HDSA volunteers with integrity, grace, patience and information to help Affiliates and Chapters be successful in carrying out the HDSA Mission.

HDSA Mission

To improve the lives of everyone affected by Huntington’s disease and their families.

HDSA Vision

A world free of Huntington’s disease.

We Can Never Lose HOPE……………

 

 

 

 

 

Fundraising

Attention All Runners in the San Francisco Bay Area!

The 1st Team Hope 5K Walk & 10K Timed Run is this Saturday, June 22nd.

           It’s not too late.  You can walk up and register

                                     the morning of the event!

 

Register:  http://www.hdsa.org/thwsanjose

Where:  Campbell Park, E. Campbell Avenue & Gillman Avenue, Campbell CA.

Time:  Check-in: 8 am

Race Time:  Runners-9am & Walkers 9:15 am

Cost:  Runners-$60      Walkers-$25       Children under 12-$10

Why:  You will be helping in the fight against Huntington’s disease that has NO CURE. This is a fundraiser for the nonprofit, Huntington’s Disease Society of America, whose mission is to help everyone affected by Huntington’s disease (HD) and their family. what is HD?

Contact:  Therese Crutcher-Marin 530 906-8415

After Event at Rock Bottom Restaurant and Brewery.  Rock Bottom will donate 10% of all Sales that day to HDSA.  Come and have lunch!!  Tell your server you are there for Huntington’s disease.   https://rockbottom.com/locations/san-jose/

     

We Can Never Lose HOPE……………….

 

Grief

Chapter 22-A Cerebral Hemorrhage

I’d like to share a very difficult time in John and my life. You’ve heard the saying, “I wish I knew then, what I know now”.  These words screamed at me for years.  They have finally silenced because I came to realize that I did what I could with the information and life experience I had at the time.

But my heart still hurts from losing my friend.

My dear friend and sister-in-law, Lora, was spiraling out of control, self-medicating with alcohol.  The threat of Huntington’s disease (HD), deep depression, unable to keep a job and her husband washing his hands of her was too much for her to bear, or really, anyone could bear.

Excerpt from Chapter 22, pg. 176 Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  What is Huntington’s disease?

“Four days after John’s thirty-fifth birthday, the phone range about nine p.m.  My heart skipped a beat, as it had been doing whenever the phone rang.  It was someone from Mercy Hospital in Sacramento, asking in a cool, unemotional voice for John Marin, the brother of Lora Marin. John was just out of the bathroom, and my face must have been white as I handed him the phone.  ‘It’s Mercy Hospital, asking for Lora’s brother.’

He took the receiver, and it was a terrible thing to watch this strong, loving man wilt like a flower.  In a strange monotone, he said, ‘Thank you. Goodbye.’

I hadn’t realized that while John was on the phone, I’d been slowly backing away from him.  Now he was walking toward me like a robot, and I became even more frightened. My hands went over my ears to shut out the words he was going to say.  As my back hit the wall, his arms went around me like a shield. “Lora fell and hit her head.  She has a cerebral hemorrhage, and she’s in a coma.  She doesn’t have much time left.'”

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance is an inspirational  love story while living in the shadow of HD.  100% of the proceeds are being donated to the nonprofit, HDSA. You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance

OR on my Author Website:  http://www.theresecrutchermarin.com

 

A Love Story, Therese-Author

What If?

In 2016, after John tested negative for the mutated huntingtin gene that causes the cruelest disease on the planet, Huntington’s disease (HD), I thought a lot about “WHAT IF“.

In 1978, when the four Marin siblings discovered they had a 50/50 chance of inheriting HD, I was so scared I broke off the relationship with John. Luckily, I was lead back to John by an epiphany.  What is Huntington’s disease 

“What If” I hadn’t found my way back to John?  I would have lost so much and paid a heavy price. Guilt would have been tattooed on my heart forever for walking away from my soulmate, my true love, a man who had never hurt me.  I would have felt ashamed for not being strong and I would never have known three wonderful women, my sisters-in-law, Lora, Marcia and Cindy.  Also, I would have missed out on knowing the two most important people in my world today; our children Keith and Vanessa.

My advice is to LISTEN TO YOUR HEART……….

 

 

 

We Can Never Lose Hope………….

Watching Their Dance is John’s and my love story while living in the shadow of Huntington’s Disease. I share the tools I found in life to live happily, even with the losses we experienced, with this huge uncertainty looming over us.  The themes of my book are mindfulness, forgiveness, hope and love.

The book is online at Amazon, B&N, iBooks, and many other book websites. My author website: http://www.theresecrutchermarin.com

 

About Author

Change

Choice, Chance and Change: The Three C’s of Life. https://www.habitsforwellbeing.com/the-3-cs-of-life-choices-chances-changes/  

When you make a choice, you change the future.

The huge uncertainty I chose to live with, John had an unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet, caused a huge CHANGE in my life. His 50/50 chance of inheriting this rare, fatal, incurable brain disorder that is like having ALS, Parkinson’s and Alzheimers symptoms at the same time taught me to live in the moment, to live mindfully, which enriched my life.

Through the years, my heart opened up to forgive more easily which lead to loving unconditionally. Even with the sadness John and I experienced, my three sisters-in-law died of complications from HD, made me appreciate and be grateful for everything I had in my life.

Therese is the author of the nonfiction, Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease. Therese has received four excellent book reviews from Kirkus, Goodreads, BookLife and Stanford University. To read the reviews, go to: https://theresecrutchermarin.com/goodreads-review/ 

We Can Never Lose HOPE…….

 

Storytelling

Excerpt from “Watching Their Dance”

Nonfiction story of Life At Risk for HD
John and Therese Marin
Therese at the 2018 HDSA Annual Convention in LA.

Chapter 7 Life At Risk

“I was ecstatic that John and I were finally living under the same roof. Our split-level apartment had two bedrooms, one bathroom, a cute kitchen with a bay window that my coleuses loved. Upstairs was a dining area and a sunken living room with a stone fireplace; a sliding-glass door opened onto a little balcony that overlooked a creek.

Anyone looking at us would have seen a happy, well-matched couple starting what seemed a wonderful life together. Little would they know the challenge that lay quietly beneath our joy. Every day, I consciously reminded myself to live in the present moment. It was the small stuff I savored: waking up next to John, seeing him every night, eating dinner together, talking about our day, feeling his arms around me. Those moments were precious, and I selfishly saved them just for me.”

Living At Risk
Living At Risk
Living At Risk

We Can Never Lose HOPE……

John and Therese have gifted $14,115.00 to the nonprofit, Huntington’s Disease Society of America (HDSA) which is the profit since the book was published in April 2017. Therese Crutcher-Marin’s author website http://amazon.com/author/theresecrutchermarin

Helping Others

Find Your Passion

Author Therese Crutcher-Marin

Finding your passion, and acting on it, I believe, is important to one’s happiness. Maybe it’s painting, writing, running, mentoring young people, teaching, helping the homeless, delivering meals to the elderly, volunteering for a your favorite charity, rescuing animals; anything that makes your heart and soul happy.

My passion is helping people. Most of my career was in healthcare, the last 10 years in a community hospice program. Focusing on a terminally ill patient’s pain and symptoms, allowing them to have the highest quality to their life for as long as possible fed my heart and soul. What is Hospice Care

Find your passion and incorporate it into your life. We live very busy lives, and adding a hour or two a week of your passion, can enrich your life.Inspirational-quotes-on-passion

We Can Never Lose HOPE………

$16.99

100% of the profit from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Therese has donated $14,100.00 to HDSA which was the profit since the book was published in April 2017. amazon.com/Watching-Their-Dance

Therese-Author

We Wish You a Merry Christmas

              Merry Christmas from the Marin Family

        May your day be filled with Laughter, Joy, Friends, and Family   

              

We Can Never Lose Hope……..

Family

Happy Turkey Day

    From my family to yours, Happy Thanksgiving! 

    

We Can Never Lose Hope………….

 

 

Family, HD Research

Kate Miner’s Sister Jenne Coler-Dark

Many of you may not know that Kate Miner, actress, musician, Huntington’s Disease (HD) Advocate has HD in her family.  Her mother, and two sisters tested positive.  Kate tested negative.  What-is-HD? 

Jenne Coler-Dark & her husband

Kate & her 2 sisters

Last year, when I was publishing my book, Watching Their Dance, I reached out to Kate requesting a book jacket comment.  She graciously agreed and her comment appears on the front cover. Kate and her husband are supporters of the HDSA FREEZE HD event that was held on Sept. 22, 2018 in Los Angeles.

A few days ago, I found this awesome film, The Race, that includes Jenne Coler-Dark’s HD story, Kate Miner’s sister and who is gene positive. Read Jenne Coler-Dark’s Story

The film is about a young, idealistic Huntington’s Disease researcher who comes face-to-face with three generations of a family devastated by the fatal, incurable disease she studies. For the scientist, who has never met anyone with Huntington’s Disease, the stakes of her research become real. For a Huntington’s Disease patient at the center of the story who is watching her mother sicken, fearing her own demise, and afraid for her two kids, it’s a mother’s plea – and a race against time  

To watch the film, please click on link below:

https://theaudienceawards.com/films/the-race-207129?fbclid=IwAR3qzCaijs6hOCgXkaK6VaHSG957KWs7HephWX9qOJK87U-J2m8JBBqqAMQ

  100% of the proceeds from the book are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). It’s available on many book websites like Amazon.com

We Can Never Lose HOPE……………………….