Heightening awareness of Huntington’s Disease is important so I was grateful to have twenty minutes to talk about the disease. I also shared information regarding the HDSA San Francisco Bay Area Affiliate upcoming Virtual Trivia Night with Sonoma County Beer fundraiser on April 25, 2021.
Enjoy a night of Trivia while sipping on HenHouse, Bear Republic & Lagunitas beer!
Sunday, April 25, 2021 5:00 pm – 8:00 pm
Open to San Francisco North Bay residents/or anyone who can pick up their beer in Petaluma.
Must be 21 or older to participate.
$40 donation per person; each person will receive a total of 4 beers, a combination of HenHouse, Bear Republic & Lagunitas. (while supplies last)
Form a trivia team (any number of people can be a team), enjoy local brews, and compete for a case of beer (24 – 16 oz cans) from one of the 3 beers.
My family has been greatly affected by Huntington’s Disease (HD), and after my third sister-in-law, Cindy, died from HD complications, I searched for ways to help in the fight against the cruelest disease on the planet. What is HD?
One way to contribute is through Enroll-HD. Enroll-HD is a worldwide observational study of Huntington’s disease (HD), meaning that it doesn’t involve taking a drug but tracks peoples’ health and behavior over time. There are more than 20,000 participants globally, who visit hundreds of sites and all undergo the exact same evaluations yearly. Anyone from an Huntington’s Disease family can participate, regardless of gene status or risk. It is a resource for the entire HD community, including patients, families, patient advocates, clinicians and other healthcare professionals, researchers, and anyone else who has a connection to HD.
The study is enabling scientists to identify new drug targets, helping pharmaceutical companies to recruit participants quickly and efficiently for their trials, and moving the field towards an improved understanding of HD and quality care.
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 HDSA. It’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.
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.”
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
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
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.
“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
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
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 withHuntington’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”.
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.
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