On Saturday, May 2nd, 2020, the Marin Family Team raised over $1,000.00 to help in the fight against Huntington’s Disease (HD) by participating in a VIRTUAL Team Hope Walk hosted by the nonprofit, Huntington’s Disease Society of America (HDSA). http://hdsa.org
HDSA is a premier nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease: a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer simultaneously, and there is NO CURE.
Keith & Fran Marin and Jody Sorenson, Fran’s mom
Since the fundraising event was VIRTUAL, my husband, John, myself and my 90-year old dad, Jim, walked in our neighborhood as did folks across the country. Our children and their spouses also walked and even though the HD community couldn’t be together, because of the Coronavirus, I felt a sense of camaraderie and solidarity in my heart.
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!
10% of all HD cases are children with Juvenile Huntington’s Disease.
A VIRTUAL walk is a real walk, but on your terms: You get to choose your own course, you can walk in your driveway, neighborhood, in your house and even on treadmill!
Sign up now and participate in the virtual walk by raising money and awareness. Your family, friends,colleagues and health care providers can join your Virtual Team Hope Walk on MAY 2nd, 2020, 10 AM (PST).
*Join the HDSA Familyon May 2nd as we kick offHuntington’s Disease Awareness Month with the LARGEST TEAM HOPEEVENT EVER!
The nonfiction book I published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, begins with the following words:
“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.”
Never before had I been confronted with such a huge crossroad that caused a dramatic pause. That pause, lasting for seven heartbreaking, confusing months, was whether to continue my relationship with the love of my life, John Marin, who had a 50/50 chance of inheriting Huntington’s disease (HD). HD is a rare, fatal, genetic brain disorder with NO CURE and it affects children and adults. To read more about HD, click here
Having grown up in the Midwest, with 1950’s over protective parents who’s only expectation of their four (4) daughters was to marry and have kids, I lacked life experiences with death and genetic diseases.
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 usually 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 inheriting the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
Did you know Woody Guthrie died of Huntington’s disease? He died in 1967 and soon after that, his wife, Marjorie Guthrie, organized the Committee to Combat Huntington’s Disease (CCHD) that evolved into the Huntington’s Disease Society of America (HDSA).
You can download and read Marjorie’s story: Finding Our Way The Story of Woody and Marjorie Guthrie’s Fight Against Huntington’s Disease.
We Can Never Lose HOPE……
Author Therese Crutcher-Marin Book Signing in Auburn CA
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. Since publishing, I’ve donated over $14,000.00.
“Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security.” ~John Allen Paulos
John and I lived AT RISK for the cruelest disease on the planet, Huntington’s disease (HD), for 38 years. It was in 2016, that John decided he wanted to know his gene status. Many years ago, the genetic test became available in 1993, I asked him to have the test done, but he couldn’t, and I understood why. 5-tips-for-living-with-uncertainty/
Why wouldn’t John test, you ask? The reason “why”was staring at both of us everyday for 28 years; that being the faces of his three sisters who died because of HD. John didn’t want to know; hope was what he and I clung to, as well as to each other.
Lora, Cindy, Marcia Marin
John’s oldest sister, Lora, my dear friend, was never tested or diagnosed because she began showing symptoms in 1982 and no test was available. She became very depressed, a common first psychiatric symptom of HD. Living AT RISK for Huntington’s disease was emotionally difficult for Lora and I knew it and so did John and we tried to help but the stress lead to her demise. Lora chose to self-medicate with alcohol, and, unfortunately, she drank herself to death. We lost her in 1989 at age 41. What-is-HD
I know how this sounds, morbid, but the world has no idea of what it is like to live with unimaginable uncertainty every day. Living with the fact that your world could change overnight, how you could be struck down with the disease at the prime time of your life, and then, how you would slowly lose your ability to walk, talk and think over a ten to twenty period of time, is beyond the word difficult. what-is-high-functioning-anxiety
It’s estimated that approximately 200,000 live AT RISK in the United States and an unknown number exists throughout the world. Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is the story of how I survived living in the shadow of Huntington’s disease, waiting and watching ever so closely to see who of the four people I loved, would fall prey to HD; John, Lora, Marcia and/or Cindy Marin. amazon.com/Watching-Their-Dance
Our daughter, Vanessa, and daughter-in-law, Fran, were on the HDSA 2016 NYC Marathon Team and raised $110,000.00.
Our son Keith, son-in-law, Scott, Scott’s parents, John and I traveled to New York and cheered them on. We had so much fun while the runners raised money to help in the fight against Huntington’s disease.What-is-HD
Do you have a color that soothes and relaxes you? I’ve loved purple since I was a little girl and when I wear it, it makes me happy. When John and I got married in 1980, my bridesmaids dresses were a soft lavender shade. It’s hard to find purple in woman’s clothes, so when Vanessa, my daughter, and I shop, we’re both on the look out for anything purple. My Aunt Trina sends me Lavender chamomile body wash and lavender mist spray to put on my pillow at night
When I decided to marry John, even with his unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet with NO CURE, instead of worrying every minute of every day, I chose to cling to HOPE. what is HD?
HOPE is a powerful emotion that gave me strength, so at night when I went to bed, I wrapped my arms around John and HOPE. Both gave me the strength I needed and I lived with HOPEin my heart for 38 years. (I still have HOPE that one day there will be a cure for Huntington’s disease.)
HOPEalso calmed my FEAR, another powerful emotion, that can consume your thoughts.
When the world says, ‘Give up’ HOPE whispers,
‘Try it one more time.’
In every book I sell, I write:
We Can Never Lose HOPE………………….
An inspirational love story while living in the shadow of Huntington’s disease.
The theme’s in the book areHOPE, UNCONDITIONAL LOVE and FORGIVENESS.