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Watching Their Dance

HD Awareness, Watching Their Dance

Jackie MacMullan-ESPN Columnist and Television Analyst

I’m posting a message from Jackie MacMullan, ESPN columnist and television analyst, and a supporter of the nonprofit, Huntington’s Disease Society of America (HDSA) for many years.

Author Therese Crutcher-Marin

Jackie has published many books in her career, so as a fellow writer, I’m sending her a copy of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, hoping she might mention the book so more dollars can be generated from sales that I will donate to HDSAIt’s a long shot!  You never know!

From Jackie:  “Nearly 30 years ago, I was working in the newsroom of the Boston Globe as a sportswriter when I fielded a phone call from a woman named Mae Long. She was the executive director of the New England chapter of the Huntington’s Disease Society of America and she wanted to know if I would shoot free throws to help find a cure for the disease. Article from: https://hdsa.org/living-with-hd/faces-of-hd/meet-jackie/

I was 22 years old at the time, a recent graduate of the University of New Hampshire, where I had played four years of basketball. Shoot free throws? Sure. But what was HD? I had never heard of it. What caused it? What were the symptoms? It was a mystery to me.

I went to Mae’s hoop-a-thon, and I was in for a rude awakening. I met a number of HD patients, some whose symptoms had not yet manifested themselves, and others who were in a wheel chair, unable to speak, in the advanced stages of a disease that I learned had no cure and indiscriminately decimated families.

It was impossible to forget those patients, their families and their poignant stories. Their plight stayed with me for days, weeks, and years. Before long, I was attending events, more hoop-a-thons, even spending a year as a national spokeswoman.

Three decades later, I remain committed to the HD community and its quest to find a cure. I’ve met and lost friends with HD, watching them slip away over time with uncommon grace and dignity.

Our family has befriended Meghan Sullivan, one of the rare patients who has been afflicted with early onset of HD. Meghan is only in her 20’s, but she is already in advanced stages of the disease. That has not stopped her and her mother Cheryl from being vocal advocates for the HD community.

I will never forget the evening Meghan stood in our kitchen and calmly explained to my husband Michael and me that she planned to put a face to HD for as long as her body and mind would allow it. She had already lost her father to the disease and promised him she would raise awareness. Her courage was both heartbreaking and inspiring. Though Meghan’s symptoms have limited her, she is still fighting, still honoring her commitment to her father.

If she hasn’t given up, then how can we?”

— Jackie MacMullan

We Can Never Lose HOPE…..

A Love Story, Watching Their Dance

In My Hands I Held My Dream

Even during this difficult time with the pandemic, I find joy and peace in reflecting upon the seven (7) year journey I conscientiously took, to write and publish a book, hoping it would soothe my soul.

Three years ago, I received at my home, the first shipment, 300, of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. It was a surreal feeling, holding a book in my hand.

This journey helped me fight through the complicated grief that I’d been stuck in.  As I wrote my story, and crafted the words on paper, it validated what John and I had lived through.

In April 2017, having healed, I could now talk about my three sisters-in-law, Lora, Marcia and Cindy who were struck down early in their lives by the insidious Huntington’s Disease, without crying.

Author Therese Crutcher-Marin Book Signing in Auburn CA

For the next several days, John and I had fun addressing approximately 30 books to mail to those who ordered a copy on my author website.  I also had two local book signing events to organize; April 29 and May 7, 2017.  https://www.theresecrutchermarin.com

It was a very exciting time for me as my dream came to fruition. To read Watching Their Dance book reviews, click here: https://theresecrutchermarin.com/goodreads-review/

 

     

The following is my personal tag line that I write in every book I sell.

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

 

 

Hope, Watching Their Dance

More on Updating the Nonfiction Book, “Watching Their Dance”

In the December 3rd blog, I posted about my editor suggesting I update the front cover of Watching Their Dance with a quote from the review I received from Kirkus Reviews.

Full Review:  https://www.kirkusreviews.com/watching-their-dance/

Since I published in 2017, many promising clinical trials have been started around the world, so I also updated pages 306 & 307, “Huntington’s Disease Update”.

Here is an Excerpt from “Huntington’s Disease Update” page 306.

Through the years, I have coined the statement, “Huntington’s disease is the cruelest disease on the planet”. While there is still no treatment or cure for this fatal progressive disease, the Huntington’s disease community has been blessed with good news and HOPE for a treatment has grown exponentially.

In April 2017, when I published Watching Their Dance, Ionis Pharmaceuticals, Inc. had just announced a potential treatment for Huntington’s disease; a gene-silencing program. Experts said it could be the biggest breakthrough in neurodegenerative disease in 50 years.   Ionis stated they had favorable results from its 1/2a trial with the drug, IONIS-HTTRx.

HTTRx targeted the huntingtin gene that provides instruction for creating a protein called huntingtin protein. The mutated huntingtin gene expands causing abnormal CAG counts that creates a toxin protein that kills the nerve cells in the brain, which causes Huntington’s disease.

Author Therese Crutcher-Marin

To continue moving forward, Ionis partnered with Roche Pharmaceuticals to conduct the clinical trials on the drug, now called RG6042. The trial is currently being conducted at 80-90 sites in 15 countries. There are 660 patients with early symptoms of Huntington’s disease enrolled in the study.

To visit my author website, click on link: https://www.theresecrutchermarin.com

We Can Never Lose HOPE……….

 

 

Watching Their Dance

Updating Nonfiction Book- Watching Their Dance

A while back, my editor, Pam Feinsilber, suggested I update the front cover of my nonfiction book, Watching Their Dance, and highlight the review that Kirkus Reviews gave to the book.  So, I did.

The words I highlighted, that appear at the top of the front cover are:

This is a rare treat—a true story that is as uplifting as it is heartbreaking.  A poignant remembrance of a love forged in crisis.” —Kirkus Reviews

To read the full Kirkus Reviews on my nonfiction book, visit:  https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/

Kirkus Reviews is an American book review magazine founded in 1933 by Virginia Kirkus. The magazine is headquartered in New York City.  Every author wants a good review from this magazine.  

Author Therese Crutcher-Marin

To visit my author website, click on link: https://www.theresecrutchermarin.com

We Can Never Lose HOPE……….

 

 

Family, Watching Their Dance

Something Good That Came Out of My Family’s Tragedy

 

My family is everything to me and when I think back to how I almost didn’t have John, his three sisters, Keith, and Vanessa, in my life, I get goose bumps.  My three sisters-in-law were a huge part of John and my life and after losing  Cindy, the third sister to die from complications of Huntington’s disease (HD), I was looking for something good that could come out of my family’s tragedy.

That’s when I started writing John and my inspirational love story, Watching Their Dance, while living in the shadow of Huntington’s disease.  The book honors Lora, Marcia and Cindy while heightening HD awareness and generating dollars to help in the fight against the cruelest disease on the plant. 

“Behind every exquisite thing that existed, there was something tragic.” ~Oscar Wilde

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

100% of the proceeds from Therese’s book is being donated to Huntington’s Disease Society of America.

We Can Never Lose Hope………………..

Watching Their Dance

Working Toward A Common Goal

I want to give a shout out to a Facebook friend of mine, Evelyn.  Evelyn, like myself, is an advocate for Huntington’s disease and on the board of the Huntington’s Disease Society of America (HDSA) Arizona Chapter.  Last year, she organized a successful fundraiser, an annual Team Hope Walk program, a signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease.   http://arizona.hdsa.org/  

I had reached out to Evelyn before the event, to ask if I may donate a signed book for their raffle. She responded and then asked if she could sell the book for me at the event?  Partnering with HDSA Chapters, there are 54 Chapters in the U.S., in my HD fundraising/HD awareness project is what I’ve been striving for.  Of course, I agreed, sent her a dozen books, she sold five at the event, and she continues to sell the rest of them. It’s a win/win because HDSA National is receiving 100% of the profit from sale of books.

Thank you Evelyn for your Teamwork in marketing my book since all HDSA Chapters have a common goal: 

“Improving the lives of everyone affected by Huntington’s disease.”

We Can Never Lose HOPE…………

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

John & Therese donated $9,015.00 to HDSA last Dec. which was the profit since publishing in April 2017. 

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Watching Their Dance

Watching Their Dance-Excerpt from Ch. 16

In Chapter 16 of my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, I write about  a very stressful time; my maternity time was up and I went back to work leaving my baby for the first time since he was born.  And, my second sister-in-law, Marcia, the quiet, brave, professional sister visited from New Jersey for Christmas and the HD symptoms were hard to miss.  Except for the Marin siblings who ignored hard stuff until it came to a head. 

Chapter 16-The Accident Buy book

“With the busy lives we led, it wasn’t hard to shove Huntington’s to the back of my mind. At the same time, I consciously had to stop my forward momentum and take time to be thankful for the life John and I had. Hassles at work or the refrigerator giving out or Keith cranky with an ear infection—these were small, petty distractions I didn’t let upset me. John was healthy, not showing a sign of Huntington’s Disease, and our child had brought a joy to our lives I’d never experienced before. My heart was bursting with the love I felt for my two favorite boys.

That Christmas, Cindy and Brad stayed in Canada, but Marcia flew in for the holidays. She looked a little thinner, and she was wearing shoes without heels, which was uncharacteristic of her. Both she and Lora were barely five-foot-one, and both had always worn really high heels.”

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a nonfiction/memoir, can be purchased on Therese’s author website    Amazon  B&N  & in Kindle, Kobo, Nook, and iBooks format.

We can never lose Hope………………..Therese

Watching Their Dance

“Watching Their Dance” and Goodreads

Early in September 2017, after returning home from our 3-month book tour, I was updating my Goodreads Author Profile when I found this wonderful review on my book, Watching Their Dance. I was in shock because I had not submitted it.  My publicist said they reviewed it because I ran a “Goodreads Giveaway” last May, where I gave away 10 books. 817 people signed up for the event and Goodreads drew the 10 names.

I’m thrilled with the review to say the least. Goodreads 

The last statement of the review says:  ‘While you will learn a great deal about Huntington’s Disease along the way, this book has much to offer beyond the boundaries of any disease.” by Jazz Jaeschke for Story Circle Book Reviews, reviewing books by, for, and about women.

To read the complete review: click on this link:  https://www.goodreads.com/review/show/2094596155

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

 

We can never lose HOPE…………Therese

Watching Their Dance

“Watching Their Dance”……….An Inspirational Story

Continued from August 31 blog   https://theresecrutchermarin.com/new-blog-page/  

In my last blog, I wrote that the Huntington’s Disease Community is the first audience I chose to promote Watching Their Dance to because of the subject matter (Huntington’s disease). Since I’m donating 100% of the proceeds from the book to Huntington’s disease organizations around the world, the HD community has been very supportive, and I will continue to connect with them for years to come.

The second audience I believe would enjoy Watching Their Dance are readers of inspirational stories. Kirkus Reviews said this about the book, “This is a story more about the power of hope than the wages of Huntington’s. Crutcher-Marin writes affectingly about the way her marriage was actually fortified by its precariousness—she learned to love more deeply in the shadow of her husband’s mortality.”   https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/   

Here are a few books I’ve read that are inspirational (in my opinion):

Breaking Night: The Liz Murray Story     https://www.goodreads.com/book/show/1432370.Breaking_Night 

The Climb of my Life: Scaling Mountains with a Borrowed Heart by Kelly Perkins                 https://www.goodreads.com/book/show/2102248.The_Climb_of_My_Life 

Brain on Fire: My Month of Madness by Susannah Cahalan                             https://www.goodreads.com/book/show/13547180-brain-on-fire?ac=1&from_search=true  

Glass Castle by Jeannette Walls   https://www.goodreads.com/book/photo/7445.The_Glass_Castle 

Tuesdays with Morrie by Mitch Albom           https://www.goodreads.com/book/show/6900.Tuesdays_with_Morrie  

                 

We can never lose HOPE……………..Therese 

To purchase Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, please visit my author website if you’re in the U.S. https://www.theresecrutchermarin.com

Outside the U.S., you can find it on Amazon and other book websites. It’s available as a Kindle, Nook, iBooks, and Kobo file.