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HD Awareness

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…..

HD Awareness

Huntington’s Disease, One of 7000 Rare Diseases

It is May 31st and we close out Huntington’s Disease Awareness Month  #LetsTalkAboutHD

Author Therese Crutcher-Marin

For me, it’s not the end of raising awareness because I’m constantly posting Huntington’s disease (HD) information on all my social media platforms and wearing my Team Hope Walk T-shirt whenever I can.  What is Huntington’s Disease 

Since Huntington’s Disease is a rare disease, you may not know there are over 7,000 rare diseases. A rare disorder is a disease or condition that affects fewer than 200,000 Americans.  On the NORD, National Organization for Rare Disorders, website Huntington’s Disease is listed.   https://rarediseases.org/?s=H&post_type=rare-diseases

NORD’s mission statement:  “NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.”

Register for the NORD Virtual Forum on July 18-19, 2020:  https://rarediseases.org/living-rare-forum/

Wikipedia says, “The US organisation Global Genes has estimated that more than 300 million people worldwide are living with one of the approximately 7,000 diseases they define as “rare” in the United States.”

We Can Never Lose HOPE…….

To receive my blogs, go to my Author Website https://theresecrutchermarin.com and sign up.  When you sign up, I will send you the first Chapter of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

 

 

 

 

 

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.