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.
If she hasn’t given up, then how can we?”
— Jackie MacMullan
We Can Never Lose HOPE…..
It is May 31st and we close out Huntington’s Disease Awareness Month #LetsTalkAboutHD
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
MAY is Huntington’s Disease Awareness Month
My name is Therese Crutcher-Marin and I’m kicking off Huntington’s Disease Awareness Month. For forty years, I’m a Huntington’s disease (HD) advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. My author website: https://theresecrutchermarin.com
#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month to encourage families to share their experiences with HD throughout the month of May.
Many people are not familiar with Huntington’s disease and Juvenile Huntington’s disease (HD) and have never seen a person or child with HD or JHD.
HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers – simultaneously. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.
There is NO CURE, YET!
We Can Never Lose Hope……
National Volunteer Week is April 19-25 this year and it’s an opportunity to celebrate the impact of volunteer service and the power of volunteers to tackle society’s greatest challenge, to build stronger communities and be a force that transforms the world.
I’m shouting out a Huge THANK YOU to all the Huntington’s Disease Society of America (HDSA) volunteers across the country. Thank you, Thank you, Thank you and Thank you.
I’ve been a volunteer for the nonprofit, Huntington’s Disease Society of America, Inc. (HDSA) for the past four (4) years and currently I serve as the Chair for the San Francisco Bay Area Affiliate. To find out more about the affiliate, click here: San Francisco Bay Area Affiliate
HDSA is 90% volunteer based which is incredible with 55 Chapters/Affiliate across the U.S. All the Chapters/Affiliates that are all managed by volunteers and each of them host a Team Hope Walk every year to raise dollars for research, to support 50 Centers of Excellence and other resources to improve the lives of everyone affected by HD and their families. For more information on Huntington’s disease, click here: http://hdsa.org
I’m blessed to work with awesome people who are passionate about helping in the fight against Huntington’s disease in the Bay Area. These folks, volunteers, give unselfishly of their time and energy even though they have family members struggling with Huntington’s disease (HD) and who are they themselves at risk for the disease.
We Can Never Lose HOPE……………
Dr. Arthur Kleinman, professor of medical anthropology and psychiatry at Harvard Medical School, is the author of the article:
“Treating Disease Is No Substitute for Caring for the Ill“.
“The American health-care system focuses overwhelmingly on curing acute problems. It needs to do far more to provide ongoing support for patients with chronic maladies.
The U.S., in effect, has two health systems. One addresses disease, the science of what makes us sick; the other addresses illness, the human experience of being sick. Disease demands treatment, while illness calls out for care.”
40-50 millions of Americans act as family caregivers. Included in those millions are caregivers for a loved one with Huntington’s disease (HD). HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time. There is NO CURE. More on Huntington’s disease-hdsa.org
Custodial Care, a non-medical care that helps individuals with their daily basic care, such as eating and bathing. Custodial care for an individual is generally recommended by authorized medical personnel, but providers of custodial care are not required to be medical professionals.
Custodial care at home is typically covered only under long-term care (LTC) insurance, not by Medicaid, even though home care is cheaper than a nursing facility.
Unfortunately, for HD families, insurance doesn’t pay for custodial care, unless they have LTC, so family members provide the care for their loved one. HD patients can live up to 20 years with the disease and need custodial care for years. I for one can vouch for this as my two (2) sisters-in-law each struggled with HD for 17 years. Luckily, my family was able to pay for private caregivers but not everyone can do this.
We Can Never Lose HOPE………..
Visit my author page and read about my HD journey. https://theresecrutchermarin.com
More on Dr. Kleinman: https://en.wikipedia.org/wiki/Arthur_Kleinman
Crossroads symbolize an important decision that is unavoidable. The choice to continue the same way, which would be a straight path, no longer exists. Now the road divides into at least two paths. The traveler must choose one or remain stuck in place. psychologytoday.com-ways-get-yourself-unstuck
In my last blog, I wrote about the great pause, the crossroad, that I was confronted with; be with the love of my life, John Marin, or walk away forever. Living with an unknown gene status for Huntington’s disease (HD) petrified me and I questioned whether I had the strength and a love strong enough to live a life of uncertainty. what-is-huntingtons-disease
In the end, I took a leap of faith to be with John and even though his three (3) sisters died from Huntington’s disease, I have never regretted my decision.
We Can Never Lose HOPE….
Therese’s author website: https://www.theresecrutchermarin.com
In 1983, Orphan Drug Act (ODA) was set up to encourage increased development of drugs for rare diseases. It was amended in 1984 to define rare diseases as those that affect less than 200,000 people in the United States, but it also included drugs for diseases affecting more than 200,000 people as long as there was no commercial viability—that is, that the cost of development and making available in the United States a drug for the disease would exceed revenue from the US sales. Huntington’s disease fits that criteria. Overview-of-huntingtons-disease/
Wave Life Sciences has seen the FDA grant it an orphan drug designation for its lead candidate WVE-120101. The experimental drug, which targets rs362307–a single nucleotide polymorphism that is associated with the disease-causing mutation in the huntingtin gene.
The orphan status gives it 7 years of exclusivity in the U.S., and other boosts, including tax credits related to clinical trial expenses, an exemption from the FDA user fee, and FDA assistance in clinical trial design.
To read more about the Orphan Drug Act, visit: https://www.ajmc-the-orphan-drug-act
We Can Never Lose HOPE………………
The author website for the nonfiction book I published is https://www.theresecrutchermarin.com
Watching Their Dance on many book websites like Amazon https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/
The 1st Team Hope 5K Walk & 10K Timed Run is this Saturday, June 22nd.
It’s not too late. You can walk up and register
the morning of the event!
Where: Campbell Park, E. Campbell Avenue & Gillman Avenue, Campbell CA.
Time: Check-in: 8 am
Race Time: Runners-9am & Walkers 9:15 am
Cost: Runners-$60 Walkers-$25 Children under 12-$10
Why: You will be helping in the fight against Huntington’s disease that has NO CURE. This is a fundraiser for the nonprofit, Huntington’s Disease Society of America, whose mission is to help everyone affected by Huntington’s disease (HD) and their family. what is HD?
Contact: Therese Crutcher-Marin 530 906-8415
After Event at Rock Bottom Restaurant and Brewery. Rock Bottom will donate 10% of all Sales that day to HDSA. Come and have lunch!! Tell your server you are there for Huntington’s disease. https://rockbottom.com/locations/san-jose/
We Can Never Lose HOPE……………….
I’d like to share a very difficult time in John and my life. You’ve heard the saying, “I wish I knew then, what I know now”. These words screamed at me for years. They have finally silenced because I came to realize that I did what I could with the information and life experience I had at the time.
But my heart still hurts from losing my friend.
My dear friend and sister-in-law, Lora, was spiraling out of control, self-medicating with alcohol. The threat of Huntington’s disease (HD), deep depression, unable to keep a job and her husband washing his hands of her was too much for her to bear, or really, anyone could bear.
Excerpt from Chapter 22, pg. 176 Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. What is Huntington’s disease?
“Four days after John’s thirty-fifth birthday, the phone range about nine p.m. My heart skipped a beat, as it had been doing whenever the phone rang. It was someone from Mercy Hospital in Sacramento, asking in a cool, unemotional voice for John Marin, the brother of Lora Marin. John was just out of the bathroom, and my face must have been white as I handed him the phone. ‘It’s Mercy Hospital, asking for Lora’s brother.’
He took the receiver, and it was a terrible thing to watch this strong, loving man wilt like a flower. In a strange monotone, he said, ‘Thank you. Goodbye.’
I hadn’t realized that while John was on the phone, I’d been slowly backing away from him. Now he was walking toward me like a robot, and I became even more frightened. My hands went over my ears to shut out the words he was going to say. As my back hit the wall, his arms went around me like a shield. “Lora fell and hit her head. She has a cerebral hemorrhage, and she’s in a coma. She doesn’t have much time left.'”
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 is an inspirational love story while living in the shadow of HD. 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
OR on my Author Website: https://www.theresecrutchermarin.com