Most people wouldn’t agree that it’s a gift to grow old. If you have Huntington’s disease (HD) in your family, you probably would agree. HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time and there is NO CURE. For more information go to: http://hdsa.org or visit my author website at: https://theresecrutchermarin.com
Unfortunately, HD is in John’s family and his three (3) sisters inherited the mutated huntingtin gene and are gone from our sight. Each year on the birthday of Lora, Marcia and Cindy, John and I always talk about what age they would be and what they would look like. Lora died at age 41, Marcia at 49, Cindy at 54 and their mother, Phyllis, at 48.
Lora, Cindy, Marcia Marin
Through the years, our hearts have carried the loss of the sisters and is felt more intensely during the holidays and special occasions because we still want them to be with us. We can never celebrate a birthday, Christmas, Thanksgiving dinner or just hang out. We miss even something so simple as picking up the phone to talk with them. What I wouldn’t do to see these kindhearted, nonjudgemental women, who taught me about mindfulness, forgiveness, and unconditional love.
The wine tasting event supports the nonprofit, Huntington’s Disease Society of America (HDSA), that is dedicated to improving the lives of everyone affected by Huntington’s disease and their families. http://hdsa.org
In case you missed uniQure announcement regarding AMT-130, I’m posting the great news for the Huntington’s Disease community around the world. One of the locations for a clinical for AMT-130 is Ohio State.
~ Milestone Marks the First-in-Human AAV Gene Therapy Trial for Huntington’s Disease ~ Lexington, MA and Amsterdam, the Netherlands, June 19, 2020 —
uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced that the first two patients in the Phase I/II clinical trial of AMT-130 for the treatment of Huntington’s disease have been treated. To read the complete news release, visit: AMT-130_Huntingtons_Disease_FINAL.pdf
I’m a Huntington’s disease advocate, the Chair for HDSA San Francisco Bay Area Affiliate, a blogger and the author of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.
John and I have donated 100% of the profit from the book to the nonprofit, Huntington’s Disease Society of America (HDSA). To date, we’ve gifted over $15,000.00. Review by Goodreads: Goodreads.com-Watching-Their-Dance
My family wants to see the eradication of this horrific disease that has devastated the Marin Family for generations.
On July 3rd, 2020, ABC News’ Linsey Davis follows two families grappling with the rare genetic disorder Huntington’s disease (HD), compared to ALS, Parkinson’s disease and Alzheimer’s disease all in one. (if video didn’t transfer, click here to watch the video: https://youtu.be/USwMplVl5vQ)
I was ecstatic when I saw the video on ABC. I don’t know how this came about but I bet the nonprofit, Huntington’s Disease Society of America (HDSA) had something to do with it!
Thank you ABC News.
The more awareness created about HD, especially by news organization like ABC, the more people will know about this horrific genetic disease with NO CURE. What-is-Huntington’s Disease?
HDSA and many other nonprofits are being challenged due to COVID-19. Most of HDSA fundraising events were changed to VIRTUAL and with so much uncertainty in our lives, donations are down. To make a donation to HDSA and help in the fight against Huntington’s disease, click here HDSA-Make a Donation
Author Therese Crutcher-Marin Book Signing in Auburn CA
Thank you for reading my blog. I’m an HD advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the profits are donated to HDSA.
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.
The eternal optimistis a person who stays positive no matter what happens to him/her. It could be said that this approach is the opposite of complaining and seeing events as negative.
Lora, Marcia, Cindy and John Marin always amazed me because of their eternal optimist attitude. Even though they had a horrible childhood with no mother at home and an angry, absent, abusive father, they are the most positive people I have ever known.
When I was having melt downs as I watched each sister-in-law slowly be stolen from us by Huntington’s disease, they never complained or said anything negative about their situation. They just smiled and said things like, “I’m lucky I have HD instead of cancer because with cancer you have pain”, or “I don’t blame dad because he did the best he could do”.
Their positive attitude always amazed me and I felt ashamed, not being strong like them, and that I was upset about the situation and they were not. As time passed, I came to understand that their positive attitude was a gift and I was supposed to learn from them.
One of the lessons I learned was to never see the glass half empty, always see the glass half full.
John continues being an eternal optimist and always will be. That is what I loved about the Marin siblings and I was blessed to have known them and have them in my life.
Last week I wrote how I almost didn’t follow my heart and marry the love of my life, John Marin, because I was scared, fearful that Huntington’s disease would attack him and slowly steal him away from me. What-is-huntingtons-disease
At that time, I didn’t think I was strong enough or brave enough to live with an enormous uncertainty in my life forever or until there was a cure for Huntington’s disease. Fear held me hostage and blinded me of the strength’s I possessed; I am resilient, persistent, empathetic, strong, caring, kind and irrevocably in love with John.
Boz Scaggs is John and my artist, a talented musician popular in the 1970’s. Whenever I hear a Boz song, I’m taken back to college and to my then boyfriend, John Marin, before the Marin secret was revealed. artist boz-scaggs biography
As I look at the pictures of my life with John through the years, my heart skips a beat because I almost didn’t live that life. When Huntington’s disease (HD) suddenly entered our life, it scared me to death and I questioned whether our LOVEwould be enough? What is HD?
Out of fear, I left the relationship and my heart lived in the Lost and Found. For the next seven months, I did a lot of soul-searching and my emotions were all over the place. I was young and didn’t have many life experiences to shore up my doubts.
John eventually found my heart in the Lost and Found just as I discovered LOVEwould get us through the years and if he got sick, I’d be there to care for him. That’s what you do for the people that you LOVE.
I’m grateful every day that I have had with John, the LOVE of my life, who is healthy, and thankful for his negative test for the mutated Huntingtin gene. Sometimes you just have to take a chance and listen to your heart. What is Huntington’s disease
To read for the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, go to my author website and sign up for my weekly blog. I’ll email you the 1st Chapter https://theresecrutchermarin.com
Have you been confronted with a tough decision, a life altering choice that will have a huge impact on the rest of your life? Folks call it, “A fork in the road” and I had a very difficult decision, which road to take, at age 22.
Excerpt from the nonfiction book, Watching Their Dance: Chapter 1, paragraph 1
“Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next. Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make. Other lives, at least in hindsight, travel in a particular direction at one particular life-changing moment. That’s what happened to me, when, at age twenty-two, I suddenly had to confront the most complicated decision of my life.”
To read about the road I chose and the life I had, sign up for my weekly blog at https://theresecrutchermarin.com and I’ll email 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. What is Huntington’s disease
100% of the cost of the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against Huntington’s disease. To date, I’ve donated $15,000.00. About HDSA
The word Empathy is the ability to imagine oneself in the condition of another; a vicarious participation in another’s emotions.
My mother holding me during my first Christmas
My mother, Cleo Rita (McKibben) Crutcher gifted me the EmpathyGene, a gene I was happy to receive. She was a kind hearted person who could empathize when others suffered losses, tragedies, helping however she could.
As a small child I saw compassion in my mothers daily activities. One example I remember was when my sisters and I were sitting in the backseat of the car and we passed a car accident. As our car slowed down to pass the accident, I don’t know what exactly my mom saw, but she began to weep and began praying for the victims.
I’m writing about the EmpathyGene, a positive gene to have because I write about the huntingtin gene, the mutated gene that causes Huntington’s disease (HD), the cruelest disease on the planet. HD symptoms are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously and there is NO CURE. What is HD?
I focus on the huntingtin gene because I’m a Huntington’s Disease Advocate, having lost my mother-in-law and three sisters-in-law to this horrific disease.
It feels good to write about the Empathy Gene that’s a good gene to have in your family.
Author Therese Crutcher-Marin
Thanks Mom for your gift of empathy. (Jan. 12, 1930-July 19, 2006)