About Author

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.

HD Awareness

“House” TV Series & Huntington’s Disease

   MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH!

Every now and then, you will find a Huntington’s disease patient featured on a TV show, usually in a medical oriented show/soap opera, etc.  House is one such program, and there are others.  I’ve listed the three scenario’s that appeared on House. Actor Hugh Laurie stars.   https://en.wikipedia.org/wiki/House_(TV_series) 

#1. A seemingly fit and healthy personal trainer collapses while filming an exercise DVD, but her symptoms convince House she is hiding something – and gaps in her medical records increase his suspicions. Meanwhile, Thirteen begins a clinical trial for Huntington’s disease as her nerves begin to degenerate.      http://www.huntingtonsdiseasefoundation.org/ 

#2. The grumpy medic treats a 16-year-old girl who collapsed at her school’s Christmas pageant. He determines her liver is failing, but cannot fathom why. Meanwhile, Foreman and Thirteen grow closer during the trials for the Huntington’s disease drug.  https://www.wehaveaface.org/ 

#3. A man suffering chronic and severe pain makes an unsuccessful attempt to commit suicide. The grumpy medic agrees to take up his case, but is himself racked by intense pain in his leg. Thirteen receives help from Foreman while taking part in his Huntington’s disease clinical trial.  http://www.hdsa.org 

I’m really glad Huntington’s disease has come out of the closet; it’s another neurodegenerative disease like Alzheimers, Parkinson’s, ALS but there seems to have been a stigma attached to the disease.  http://www.neurodegenerationresearch.eu/about/what/ 

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  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.

#LetsTalkAboutHD

#HDAwarenessMonth 

The Marin Siblings

An Excerpt from “Watching Their Dance”

         May is Huntington’s Disease Awareness Month

Chapter 13 “A Genetic Marker”, page 113 

This chapter takes place in 1983 & 1984, which were two good years in so many ways for John and me, and Huntington’s disease, but turned tragic for Lora, John’s oldest sister. The Discovery of the HD Genetic Marker in 1983

Lora was in Starting Point in this scene, a drug/alcohol rehab center.

“Another issue weighed heavily on my mind, but I didn’t dare talk about it.  Because an early and prominent symptom of HD is depression, a person with Huntington’s can turn to alcohol as a way to self-medicate.  With all her other problems, Lora must have been terrified of having Huntington’s, because it wasn’t an abstract disease to her.  The memories of watching her mother’s struggle must have remained vivid in her mind.  

After John had attended four of Lora’s sessions, he came home with upsetting news. “Dave told the group that Lora’s hospital stay last year wasn’t about hepatitis B,’ I started nodding, ‘but the beginning of cirrhosis of the liver.’  

I gasped and my eyes starting filling with tears. “What did she say about me coming to her sessions? You told her I want to help, right?’ 

‘Yes, I asked her, Therese.’ He looked away. “She doesn’t want you there. She doesn’t even want me there, but I’m not going anywhere.  She’s so angry. I don’t think it would be good for either of you.'”

Read about Challenging Behaviors in Huntington’s disease 

From the above article:  “Substance Abuse or Dependence Includes alcohol or recreational drugs. Abuse or dependence on substances can mask and/or intensify behavior symptoms. May be used to “self-medicate” from the symptoms of HD. Interferes and/or disrupts daily life, social relationships, work performance, etc.”

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 profits from the book is being donated to Huntington’s Disease Society of America (HDSA).

We Can Never Lose HOPE………….

#LetsTalkAboutHD  #HDAwarenessMonth

#HDSTRONG #HDSAFamily

 

 

 

 

A Love Story

Memoir Receives Excellent Book Review from Stanford University

           MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH!

HOPES Book Review (Huntington’s Outreach Project for Education, at Stanford University)   HOPES website

    “Huntington’s was first known as Huntington’s chorea, as in choreography, the Greek word for dance. The term chorea describes how people affected with the disorder writhe, twist, and turn in a constant, uncontrollable dancelike motion. It is a hereditary, degenerative brain disorder for which there is no effective treatment or cure.”

     –Watching Their Dance, pp. 11

     In one life-altering moment, Therese Crutcher-Marin learned that the man she loved and his three beloved sisters were at risk for one of the most devastating genetic diseases: Huntington’s Disease. In Watching Their Dance, Crutcher-Marin recounts her journey of love, uncertainty, loss, and strength in the face of Huntington’s Disease. She tells a vivid and personal story of the experience of loving someone at risk for Huntington’s Disease, meticulously sharing the details of her fears, the symptoms of the disease itself, the care-partner experience, and the loss that inevitably comes with Huntington’s. Thrown into the wildly unsteady and frightening path of Huntington’s, Crutcher-Marin returns repeatedly to the mantra, “nothing is certain in life.”

     Crutcher-Marin weaves in details of her personal struggle with uncertainty, a daunting challenge for a woman averse to taking risks. She skillfully captures the awkwardness and difficulty in breaching the subject of Huntington’s with loved ones, and expresses a deeply personal account of her anxiety and suspicion as she worries that she can see the beginning of Huntington’s symptoms in her husband and friends. The book shows the diverse ways in which Huntington’s Disease can manifest itself in daily life to affect both patients and their care partners.

By Marika Jaeger 07 Jan, 2018 Nonfictional Literature

To read the full review on Stanford’s website please go to: “Watching Their Dance” by Therese Crutcher-Marin

HOPES FB Page   https://www.facebook.com/hopesstanford/ 

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  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     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

#LetsTalkAboutHD #HDAwarenessMonth

Therese-Author

May is Huntington’s Disease Awareness Month

What Huntington’s Disease Awareness Month Means to Me

May is Huntington’s Disease Awareness Month, a cause I believe in. So what is Huntington’s Disease What is HD?   Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.

The month means a lot to me because:  

May is when many of the HD organizations in the U.S., come together to promote one idea, Huntington’s Disease Awareness.  Help4HD International, Huntington’s Disease Foundation, Hereditary Disease Foundation, We Have A Face, HDSA, The World in HD, join forces, in an unofficial way, and publicize the month using different marketing strategies.  With differences put aside, we share a common goal of heightening HD awareness.

During this month, and since there is power in numbers, Huntington’s Disease information is seen on many social media platforms that leads to easier accessibility of resources by Huntington’s Disease families that are critical to caring for their loved ones. John and I felt so alone when we were caring for his three sisters, who had Huntington’s Disease, in the ’80’s, 90’s and early 2000 since there were no resources available.

May is when I get to participate in HDSA Northern California Chapter Annual Convention/Education Day, and, with TEVA Pharmaceuticals educational grant, the Chapter is fortunate to offer it free to  families.  At the convention, I’m privileged to meet folks who are bravely fighting Huntington’s Disease, and their carepartners who are lovingly caring for a child, spouse, mother, etc.  

May is the month I remember Lora, Marcia and Cindy in everything I do for the Huntington’s disease community

May is the month I give thanks for John’s negative test results (2016) and how our children do not have to live a life at risk for 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  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.

 

HDSA Northern California Chapter

May is Huntington’s Disease Awareness Month

Yesterday, HDSA Northern California Chapter held its Annual Huntington’s Disease Education Convention supported by a grant from TEVA Pharmaceuticals.  The grant helps the Chapter to continue the HDSA Mission:  To improve the lives of everyone affected by Huntington’s disease.            http://www.tevapharm.com/ 

The Chapter loves to offer the Convention to the HD community in May because:

May is Huntington’s Disease Awareness Month!  

It was a fun, positive, informative day for the attendees and the Board of Directors are thrilled with the turnout.   http://northernca.hdsa.org/ 

Here’s some statistics on the day.

Registered online:  187+ 22 vendors/speakers
 
Workshops & number of attendees:
Managing behaviors:                60
Advocacy and Clinical Trials:    31
At-risk Discussion:                     6
HD and the family:                    12
Yoga:                                           5
(Total 114)
HD 101 (genetic testing):                              36
Gene Positive: now what?:                           30
Increasing your support system:                  40
Advanced directives and power of attorney:16
(Total 122)
      My table at the Convention                Heidi Ramos, Amy Fedele, Katie Jackson
                

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 the convention.  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.

HDSA Northern California Chapter

May is Huntington’s Disease Awareness Month

     The HDSA NorCal Chapter Convention is Tomorrow, May 5th.

For those who live in Northern California, and would like information on Huntington’s Disease, the NorCal Chapter will host it’s 2018 Annual Convention/Education Day.   What is HD?   It’s free & lunch is provided.  Please register at:

 http://northernca.hdsa.org/about/norcal-chapter-convention-2018

In the morning, the Convention offers nine (9) workshops to chose from.  10 a.m.-11 a.m. Session 1; 11:15 a.m.-12:15 p.m. Session 2:

  1.  Managing the Behavioral Aspects of HD
  2. Advocacy and Clinical Trials
  3. At Risk Discussion Group
  4. HD and the family: Relationship Changes and Talking to Children
  5. Yoga
  6. HD 101 and Genetic Testing
  7. Gene Positive: Now What?
  8. Increasing Your Support System
  9. Advanced Directives and Power of Attorney

12:15 lunch will be provided and at 1:00 we will assemble in the Main Auditorium.

Dr. Vicki Wheelock, MD, UC Davis will speak about recent research and other news regarding Huntington’s disease.

The address is UC Davis Health Education Building at 4610 X Street, Sacramento, CA.  Hours: 9:30 am to 3:30 pm.    We HOPE to see you there! 

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 the convention.  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.

 

 

 

 

 

HD Awareness

Let’s Talk About Huntington’s Disease (HD)

       May is Huntington’s Disease Awareness Month    

                        So, Let’s Talk About HD!  

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 during their prime working years and has no cure. http://hdsa.org/what-is-hd/  

I have chosen to support Huntington’s Disease Society of America (HDSA) because I believe in their Mission statement:  “To improve the lives of everyone affected by Huntington’s disease.” 

Their Mission statement is close to my heart because my three sisters-in-law had Huntington’s disease and John and I cared for them the best we could.  Our goal was to help them have the highest quality of life as possible stay independent for as long as possible.  During that time, from 1984-2008, it was very difficult for John and myself because there were no support groups, HD clinics, or knowledgeable neurologists in the Sacramento area.   I don’t want anyone to feel as alone as we did.  

“A world free of Huntington’s disease”; HDSA’s Vision statement is what I hope to see in my lifetime. 

So, I volunteer my time to the HDSA Northern California Chapter; I’m on the Board of Directors and will president next year.   http://www.hdsa.org 

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………………..

 

 

 

HD Awareness

May is Huntington’s Disease Awareness Month

Tomorrow is MAY 1st, and the Huntington’s disease (HD) community kicks off a month of heightening awareness for this rare, genetic disease, which most people know nothing about.   http://hdsa.org/what-is-hd/ 

When I begin a conversation with someone about HD, I ask, “Do you know who Woody Guthrie is?”  If they say, “No”, I respond, “He’s a singer-songwriter, one of the most significant figures in American folk music who wrote the song, This Land is Your Land and he died of Huntington’s disease.   http://www.woodyguthrie.org/biography/biography1.htm    

Marjorie Guthrie, his wife, made him the HD poster child, after his death, for the organization she started,  “The Committee to Combat Huntington’s Disease” which evolved into Huntington’s Disease Society of America (HDSA) after her death in 1983.  http://www.hdsa.org   

History of HDSA   http://hdsa.org/about-hdsa/hdsa-history/             

What is Huntington’s disease?  I describe it to people as the cruelest disease on the planet because:

#1-it’s hereditary, so it can devastate families for generations;

#2-it is like having ALS, Parkinson’s & Alzheimers, with all their symptoms, at one time;

#3-there is no cure;

#4-there is no therapy;

#5-it’s progressive and people can struggle with it for 10-20 years;

#6-there is adult HD and Juvenile Huntington’s Disease (JHD);

#7-it can financially devastate a family because of the endless years of caregiving for a loved one.  

Today there are many organizations advocating for the disease and many researchers and scientists working toward a cure.  A few of them are:

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

Help4HD International  https://help4hd.org/

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

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

WeHaveAFace  https://www.wehaveaface.org/

  

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     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

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Marketing

Goodreads Giveaway Contest

Goodreads has a program for authors, a giveaway , that is a great way to get exposure for your book! You can list any pre-release or published books for a giveaway, regardless of publication date.  https://www.goodreads.com/book

Last year, I ran a giveaway for my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  To participate in a “Giveaway” you are required to give away 10 of your books to folks who are chosen by Goodreads.  You can restrict it to within the U.S. or not.  I chose to open the event to folks around the world because, quite frankly, I want to sell the book globally.

The exciting news is that I had 817 readers sign up for the contest, so I was jazzed.  It turned out six winners were in the U.S. and four out of the country.

Goodreads gave my book quite a bit of exposure, Story Book Book Review, they are part of Goodreads, and gave a fabulous book review, and I didn’t even have to ask for it.  (It was because I did a giveaway).

To read the full review, click below:

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

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.

We Can Never Lose Hope……………