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HD Awareness

The Marin Family Huntington’s Disease Story

Author Therese Crutcher-Marin

My name is Therese Crutcher-Marin and I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.   Therese’s Author Website    

Amazon.com/Watching-Their-Dance-Marrying-Huntingtons-

This is my HD story:  Lora, Marcia and Cindy Marin, my sisters-in-law, have died from HD complications, struggling with HD for 15-17 years. These wonderful women, who were my dear friends, enriched my life by their positive attitudes, kindness and by their strength and resilience in fighting HD.  I am blessed to have known the three women and they inspired me to write and publish the nonfiction, Watching Their Dance. I was determined to tell the Marin story.

My husband’s mother, Phyllis Iva (Cahoon) Marin was placed in Napa State (Mental) Hospital, in the late 1940’s, because of violent outbursts, hallucinations and her inability to take care of her small children.  The medical folks were unable to diagnose her and my father-in-law never heard the Huntington’s Chorea until he saw it on her death certificate. She died in 1968, at age 48, by strangulation as she had to be tied down because the chorea was so bad. 

Phyllis Marin

       

“HUNTINGTON’S DISEASE is the CRUELEST Disease on the Planet”  

We Can Never Lose HOPE………….  #LetsTalkAboutHD

To learn more about Huntington’s disease and HD resources, visit: http://hdsa.org

 

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.

 

 

 

HD Awareness

Vote for “Watching Their Dance” To be Made into a MOVIE

I submitted my book, Watching Their Dance to TaleFlick, a website I subscribe to where my book can be seen by movie producers in Hollywood.

My book has been submitted, with many other books, in a contest and the public can vote on which story they would like to see made into a movie.

TO VOTE: Please visit http://TaleFlick.com.  Click on TaleFlick Discovery and scroll down and you’ll see my book.

If chosen, we could make millions for Huntington’s disease research.

As of this morning, Watching Their Dance is in #4 position.

This is the first round of voting so please share share and share so your family and friends can vote.

Thank you!

before you found out he had Huntington's disease?
HD Awareness

Madam Secretary-TV series on Netflix

before you found out he had Huntington's disease?

May is Huntington’s Disease Awareness Month 

John and I are watching the Netflix show, “Madam Secretary” which is a fictional television drama that follows the work of Elizabeth McCord, the United States’ Secretary of State. Madam Secretary Official Site

In Season 2, Episode 6; Catch and Release episode, Huntington’s disease (HD) is used in the storyline. http://www.hdsa.org

The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. There is NO CURE for the disease.

Also, the drug Tetrabenazine, is used in the story.  Tetrabenazine is a drug for the symptomatic treatment of hyperkinetic movement disorders. It is sold under the brand names Nitoman and Xenazine among others.

On August 15, 2008, the U.S. Food and Drug Administration approved the use of tetrabenazine to treat chorea associated with Huntington’s disease.

We Can Never Lose HOPE…………….

Therese at the 2018 HDSA Annual Convention in LA.

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: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 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

#LetsTalkAboutHD #HDSA

 

 

 

HD Awareness

How Huntington’s Disease Affects Daily Life

Whenever I discover an article, a famous person, resources, a study about Huntington’s disease (HD) I like to blog about it.  What is HD?

An interesting article from the Food & Drug Administration (FDA) on Huntington’s disease:

On September 22, 2015, FDA held a public meeting to hear perspectives from people living with Huntington’s Disease (HD) about disease symptoms, the impact of HD on their daily life, and their experiences with currently available therapies.  As part of this commitment, FDA is holding at least 20 public meetings over a five-year period, each focused on a specific disease area.  To read the complete report:  https://www.fda.gov/downloads/drugs/newsevents/ucm491808.pdf

What I found most interesting is the section, “Overall Impact of Huntington’s Disease on Daily Life”.

Therese at the 2018 HDSA Annual Convention in LA.

Therese with the famous Dr. Nancy Wexler at the 2018 HDSA National Convention in Los Angeles. Therese’s author website is https://www.theresecrutchermarin.com  

100% of the profit from Watching Their Dance is being donated to the nonprofit, HDSA. Since publishing the book, Therese and John have gifted over $14,100.00 to them.

HD Awareness

Huntington’s Disease On TV

Huntington’s disease shows up on television every now and then.  I’m always so happy when it occurs because it is probably one of the least understood of neurodegenerative diseases; i.e. Alzheimers, Parkinson’s, ALS.

House (2004-2012)  Episode:  Lucky Thirteen (2008)

The season four finale reveals Thirteen has the dominant mutation for Huntington’s (HD), the disease from which her mother died. Thirteen’s Huntington’s is more aggressive, greatly decreasing her life expectancy and hastening the onset of symptoms. She exhibits self-destructive behavior, using recreational drugs and having repeated one-night stands. House fires her for recklessness but eventually rehires her. She later ceases to behave self-destructively, agreeing to participate in a Huntington’s disease drug trial.

ER  (1994-2009)  Episode:  Insurrection  (season 9)  (2003)

Features a completely disabled man with Huntington’s disease.  During the chaos caused when Dr. John Carter leads a walk-out to protest unsafe working conditions, the man’s mother disconnects his ventilator so that he can die in peace.

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. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

I’m a HD advocate having lost my 3 sisters-in-law to the disease.  John was the lucky sibling and tested negative for the mutated huntingtin gene.  I will NOT give up on the fight against this horrific disease and I’m hoping I will see a cure in my lifetime.  Read about my experience living with HD in my life.  100% of the profits from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). My author website is:  https://www.theresecrutchermarin.com

We Can Never Lose Hope…………

 

HD Awareness

ASHG Chooses Huntington’s Disease as Topic for 2019 Essay Contest


The American Society of Human Genetics (ASHG) is a nonprofit organization whose mission is to advance human genetics in science, health, and society through excellence in research, education, and advocacy. They hold a yearly essay contest for high schoolers, grades 9-12, promoting education and reflection upon genetic topics and awareness of DNA Day (Thursday, April 25, 2019). This date commemorates the completion of the Human Genome Project in April 2003 and the discovery of the double helix of DNA in 1953. http://www.ashg.org/ 

This year HDSA was very pleased to learn that ASHG’s featured essay contest topic centers on Huntington’s disease, posing a thought-provoking question about the family ethics around diagnosis. We hope this contest will promote awareness of HD by encouraging applicants to learn more about it and to think deeply about the issues faced by the HD community. For more information on the essay contest, click here

If you know a high schooler who might be interested in applying, please direct them to this website and spread the word! Essays are due March 8th, 2019, and winners will receive prizes of $100 – $1000. 

$16.99

100% of the profits 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 is the profit since the book was published in April 2017.

WE CAN NEVER LOSE HOPE……

HD Awareness

BBC-Call the Midwife

Author Jennifer Worth

I’m always watching for television shows that bring a Huntington’s disease storyline into a program. One evening I was looking at Netflix series and Call the Midwife, a BBC television show, caught my interest. It’s based on a trilogy by author Jennifer Worth.

It soon became one of my favorite shows. Then, quite by accident, I discovered Huntington’s disease (HD) would become a storyline in season 7; actually I saw a post on Facebook. “Call the Midwife” viewers left heartbroken after character is diagnosed with Huntington’s disease” call-midwife-season-7-episode-3-recap Currently, I’m watching season 5. I look forward to watching it. what-is-hd?

Therese at the 2018 HDSA Annual Convention in LA.

We Can Never Lose HOPE……….

100% of the profits from Watching Their Dance is being donated to the nonprofit, HDSA.

HD Awareness

“Chicago Med” and Huntington’s Disease

I have watched many TV MEDICAL SHOWS through the years & every so often, Huntington’s disease (HD) shows up in the script. On October 24, 2018, the “CHICAGO MED” episode featured a Huntington’s Disease patient brought into the ER.  https://www.nbc.com/chicago-med

Here’s a little info about the episode and the dilemma the doctors are challenged with concerning the HD patient.  What-is-HD?

“Protocol, as it turned out, was a major thorn in the side for Ava and Dr. Charles tonight, as well. They did their best to help a man who had Huntington’s Disease and refused to tell his son about it. He would rather die, but the problem there is that his son wouldn’t really know the truth about it. Thanks to Dr. Charles, though, there may be a way in order to help the son out for his future.”

I was thrilled to see Huntington’s disease on a popular TV show because it heightens awareness.  I wish they would have explained the disease in more detail, but I hate to complain since it was on prime time.  Hopefully, folks watching better understand the challenges of the disease.

Thank you NBC!  You can watch the episode on HULU if you have it.

We Can Never Lose HOPE….

         

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 https://www.theresecrutchermarin.com and many book websites like Amazon

HD Awareness

Memoir Heightens Huntington’s Disease Awareness

HDSA Northern California Chapter Convention/Education Day

I wrote and published the book, Watching Their Dance, for several reasons and the first reason was to heighten Awareness of Huntington’s Disease.

The book is a tool for others to use to create/heighten Huntington’s disease awareness. The story reads like a novel and appeals to a large audience, especially readers who enjoy a love story with a difficult challenge.  (It’s John and my love story while living in the shadow of HD).

To successfully fundraise for a rare, fatal, hereditary brain disorder, with no cure, like Huntington’s disease, creating awareness is vital.  How can someone be persuaded to give, if they know nothing about the cause (disease)?

So, I ask the many HD community folks who purchased the book, many thanks, to pass it on to someone who knows little about the disease.   What is Huntington’s disease?

I found this interesting article on 15 Way to Skyrocket Awareness for a Cause, and I’m going to implement a couple of the suggestions into my outreach plan.   https://www.youcaring.com/blog/2017/how-to-raise-awareness-for-a-cause

1. Organize educational events

2.  Host fundraising events      

3.  Set a world record                           

4. Be picture perfect

5. Host a video contest

6. Like and comment to win

Branding Your Cause

7. Be consistent

8. Design and distribute swag

9. Boost social media awareness

Content 

10. Produce content others find valuable        

11. Make informational pamphlets

12. Write a press release

Issue Challenges 

13. Make a viral challenge video

14. Challenge your coworkers

15. Take on a challenge

May is Huntington’s Disease Awareness Month

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 Annual Convention, June 7-9.  The book is available on her author website  https://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

In December, Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from 2017 book sales.

#LetsTalkAboutHD   #WeCanNeverLoseHOPE  #WatchingTheirDance  #HDSAFamily

Photo by symphony of love on Foter.com / CC BY-SA