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How Huntington’s Disease Has Affected My Life

May is Huntington’s Disease Awareness Month

Huntington’s disease is a fatal, hereditary brain disorder that progressively destroys the nerve cells in the brain.  It’s like having ALS, Parkinson’s and Alzheimer’s all at the same time.  There is no cure or therapy.

#LetsTalkAboutHD               #HDAwarenessMonth

#WeCanNeverLoseHOPE    #WatchingTheirDance

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at HDSA Convention in Los Angeles, June 7-9, 2018.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

About Author, HD Awareness

Writing for a HD Cure

People write books for many reasons.  In my instance, I wrote Watching Their Dance with several goals in mind. when book sales benefit a cause

Recognizing the goals or reasons for writing a story, I believe, will assist a writer with marketing their book, because it helps  identify their audience.

My goals/reasons for writing, Watching Their Dance:

  1. Create a tool to heighten awareness of Huntington’s disease
  2. Communicate the truth of what HD families go through for generations when HD is in their family
  3. Give the Huntington’s disease community around the world a way to generate money for their HD organization, i.e. HDSA, Huntington’s Society of Canada, Huntington’s Disease Association, etc., by purchasing a copy and telling others about it
  4. Donate the profit from book sales to Huntington’s Disease Society of America (HDSA)
  5. Contribute to the fight against HD monetarily that brings us closer to a cure or therapy  
  6. On a personal level, I wanted to heal from the loss of my 3 sisters-in-law, who had HD, and writing the story was therapeutic
  7. Honor Lora, Marcia and Cindy, and create a legacy
  8. Ultimately, I wanted to help find a cure for the cruelest disease on the planet

After setting my goals, the Huntington’s disease community around the world became one of my audiences. I have others that I will share in another blog.

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  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

 

 

About Author

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And I’ll email you the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s a nonfiction/memoir.     http://www.theresecrutchermarin.com   

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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  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 

100% of the proceeds from Therese’s book is being donated to HD organizations around the world.  

 We Can Never Lose HOPE………..  Therese

About Author, Love

A Fork in the Road

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is a memoir/nonfiction book, reflecting on the many crossroads I’ve been confronted with in my life, particularly a major one in November 1978. We all face them and I believe crossroads are an opportunity to explore our potential.

The following is the first paragraph in Chapter 1 which sets the stage for the story. “Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next. Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make. Other lives, at least in hindsight, travel in a particular direction at one particular life-changing moment. That’s what happened to me, when, at age twenty-two, I suddenly had to confront the most complicated decision of my life.”

Life’s crossroads create opportunity for us to choose between different options, and when we see someone embracing the moment when choices are decided upon, it can be awe-inspiring. A crossroad is about change.

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on Therese’s author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks file. 100% of proceeds goes to Huntington’s disease organizations around the world.

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We can never lose HOPE…………Therese

 

About Author, Fundraising

3rd Leg of Therese’s Book Tour

John and I are entering the last month of my book tour.  The time on the road, two months, has gone so fast; I don’t want it to end! Here’s what we have planned.

August 1-Akron Ohio. Attend a local HDSA Support Group to share the purpose of my book. A HDSA social worker facilities a support group for folks with HD and those living at risk.

August 5-Dayton Ohio. Participate in HDSA Team HOPE Walk and promote my book Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1221  

August 8-Sterling City Michigan.  Attend the HDSA Support Group meeting and share my book with attendees.    

August 12-Traverse City Michigan. Attend HDSA Team HOPE Walk and ask folks to use Watching Their Dance as a tool to heighten HD awareness.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1151 

August 19-Madison Wisconsin. HDSA Team Hope Walk to promote Watching Their Dance.      https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1152

August 27-Omaha Nebraska.   HDSA Team HOPE Walk.   https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1098

 

 

Enjoy our trip back home.   WooWoo!!!!!!

To purchase Therese’s book, please visit her Author Website:  http://www.theresecrutchermarin.com  100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world.

We can never lose HOPE…………………Therese

About Author

My Favorite Childhood Game

The other night as John and I were watching TV in our RV, I said to John, “I’m living my childhood dream by traveling across the Midwest”.  He looked at me funny and asked me to explain. I said, “When I was a kid, we played outside with the other kids in the neighborhood and our favorite thing to do was play TRAVEL.

My two sisters, Ellen, Julie and me, would run down the street, gather our friends and then we’d all run back to our house to play TRAVEL.  We’d pack our red wagon with old pots and pans, a linen sheet and other miscellaneous items and we’d travel the neighborhood pulling the wagon. Usually, we’d set up camp in one of our front yards, gather twigs for a make believe campfire, cook a meal, create a tent with the sheet, lay down for awhile and pretend to sleep and get up and do it all over again.

So why am I reminiscing about a childhood game? Because I’m fortunate to be playing TRAVEL with John in our 30 ft. RV for three months. I’m not sleeping on the ground or in a tent, in fact it’s a pretty luxurious way to play travel since I have a sink, stove, shower, bathroom and air conditioning. We’re having so much fun visiting/exploring states we’ve never been to before and we have found folks to be genuine and friendly.

Playing travel when I was young provided entertainment, burnt off some of our energy, and kept us out of my mother’s hair. My adult travel game with John does have a purpose, other than entertainment, and that is to promote my book and raise Huntington’s disease awareness.  But who said it couldn’t be fun?

Therese is donating 100% of the proceeds from her book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, to Huntington’s disease organizations around the world.  In the U.S.-HDSA.  You can purchase it at: http://www.theresecrutchermarin.com 

About Author

Book Discussion at Woody Guthrie Center

“A poignant remembrance of a love forged in crisis” Kirkus Review.

On Saturday, July 8, I will be holding a downloadbook discussion on my memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s at the Woody Guthrie Center in Tulsa Oklahoma. It will be held in the WGC Theater at 2 p.m.

 http://woodyguthriecenter.org/events/book-discussion-watching-their-dance-three-sisters-a-genetic-disease-and-marrying-into-a-family-at-risk-for-huntingtons/  

Woody’s songs celebrate the beauty and bounty of America and seek the truth about our country and its people. He turned complex ideas about democracy, human rights, and economic equality into simple songs that all Americans could embrace. Woody spoke for those who carried a heavy burden or had come upon hard times. His words gave a voice to their struggle, and his songs gave them hope and strength.

The Woody Guthrie Center, home to the Woody Guthrie Archives, preserves his legacy and life story and communicates the social, political, and cultural values found in his vast body of work. The Center is a repository for Woody’s writings, art, and songs and an educational resource for teachers and students everywhere.

This is my first book discussion event and I’m looking forward to it. I have a short PowerPoint presentation to begin the conversation.

We can never lose HOPE…………..Therese 

About Author

Therese’s Book Tour Continues in July

John and I have been traveling for about three weeks and boy have we had fun.  We’ve also seen some wild weather, i.e. thunderstorms. So, here is what we have scheduled for the month of July!

July 1-Madison Wisconsin.  HDSA Log Rolling Championship Fundraiser. The organizer of this event is Shana Verstegen who was a keynote (inspirational) speaker at the HDSA National Convention in June. She is an HD advocate and you can find her HD Workout Tips on http://www.hdsa.org  

 https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1258   

July 8- Tulsa Oklahoma. At the Woody Guthrie Center, at 2 p.m., I will be leading a discussion about my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   http://woodyguthriecenter.org/   

July 4-St. Louis, Missouri. John and I will celebrate the 4th of July with  Tom Nadelin and Claire, friend and former hospice coworker who I worked with for 10 years.

July 14-16-Okemah, Oklahoma. We’ll attend the Woody Guthrie Folk Festival to enjoy some awesome music, pay tribute to Woody and promote Watching Their Dance. I’ll be working side by side with the HDSA Oklahoma Chapter.  Okemah is where Woody was born.

http://www.woodyfest.com/

July 22-Hilliard, Ohio. HDSA Team Hope Walk.  Sign up below for the walk if you live in the area.  

https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1189

Vacation time!  Woo Woo!

Therese’s book, Watching Their Dance: Three Sisters and Marrying into a Family At Risk for Huntington’s can be purchased on her Author Website:   http://www.theresecrutchermarin.com

100% of the proceeds from Therese’s book is being donated to Huntington’s disease organizations around the world.

Have a wonderful, fun filled summer!   Therese

About Author

Fulfilling a Dream

I’m the sort of person who perseveres, never gives up, and will finish a project no matter what the cost. So when I decided to write my story, I planned and planned, I have Obsessive Compulsive Disorder (OCD), and by sticking to my plan, I successfully published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s on April 1, 2017.  It truly was a dream come true. Though, I must tell you, it took seven years to finally hold a book in my hand, and I would do it all over again, and will, as I’m working on a historical fiction novel with a sequel.

So, if you have a dream, here is the first step in achieving/fulfilling your dream:

Believe it is achievable. Unfortunately, too many people will never accomplish their dreams because they simply refuse to believe in themselves. Optimism is absolutely required for dream fulfillment and life enjoyment. If you don’t have natural self-confidence, make finding it your first dream to accomplish.  http://www.becomingminimalist.com/how-to-fulfill-dreams-thoughts-on-an-ebooks-anniversary/

Dreams come in all shapes and sizes.  My dream was to write an inspirational story that offered lessons to readers, and publish the story in a book that would live beyond my lifetime.

What is your dream? I encourage you to not let your dream die; just go for it and make it a reality.  You’ll never regret it and it will be an achievement you’ll be proud of the rest of your life!

Therese’s author website is:  http://www.theresecrutchermarin.com

We can never lose HOPE……………………Therese