Three (3) years ago today, John and I headed out in our new 30 ft. RV, headed for the Midwest to promote the nonfiction book I had just published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. amazon-Mrs.-Therese Crutcher-Marin
The Huntington’s Disease Society of America (HDSA) Annual Convention was being held Schaumburg IL that year and part of the book tour was to attend the convention where I would sell the book. One of reasons I wrote the book was to donate 100% of the proceeds to HDSA; two other reasons were to heighten Huntington’s disease (HD) awareness and honor my three sisters-in-law who had passed away from HD complications. hdsa/annual-convention/2017-2/
John and I spent three months touring the Midwestern states, Nebraska, Kansas, Ohio, Michigan, Wisconsin, Illinois, Missouri, attending 11 HDSA Team Hope Walks, engaging with families at Walks, listening to their HD stores, talking with TEVA reps and selling the book.
In July, we attended the four (4) day Woody Guthrie Folk Festival in Okemah OK, birthplace of Woody Guthrie. It was hotter than hades but a wonderful experience. I was thrilled to meet some of the Arlo Guthrie family members. We also visited the Woody Guthrie Center in Tulsa OK and I held a book discussion with community members. Woody Guthrie Folk Festival/2017-book-tour/
John and I returned home at the end of August 2017, and I wanted to keep traveling, but we needed to get back to reality.
When COVID-19 became a reality, around March 11th, 2020, it changed so much in our daily lives and forced us to do things differently, like changing a fundraiser/event/convention to VIRTUAL events. Also, Huntington’s disease families had grave concerns how the virus would affect their loved ones living with Huntington’s disease.
The 35th Annual Huntington’s Disease Society of America Convention, that I usually attend, was switched to a VIRTUAL event, and redesigned in a matter of about 30 days! It was amazing at the speed HDSA changed it to Virtual.
John and I were looking forward to traveling to New Orleans, that’s where the convention was supposed to be held, because we usually add on two weeks for a vacation. What I missed most of all by it being virtual, were the hugs from friends and reconnection with friends who we look forward to seeing each year at the convention.
HDSA did not disappoint and I commend them for offering the convention for free which was a wonderful gift to global Huntington’s disease community. The sessions offered were timely, uplifting, and informative especially on Saturday, June 6th, with the updates on clinical trials.
We all know how music and the lyrics to a song can trigger emotions and take us back to different times in our lives. Music can touch your soul; reminiscent of special times in your life or challenging ones.
In the AFTERWORD section of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, I wrote a poem. I’m really not a poet but Bruce Springsteen’s song, Land of Hope and Dreams, inspired me to write about my own hope and dreams in the mist of living with the threat of Huntington’s disease.
100% of the cost of the book is donated to the nonprofit, Huntington’s Disease Society of America. http://hdsa.org
“We’re all riders on a train traveling through life. The choices we make on the journey determine the weight of our load. When confronted with tough times, many discover they must lighten their load.
John Anthony Marin, my key rider, willingly disembarked in 1978, while I struggled with the direction of my train. Eventually, I circled back to find him waiting patiently for me. He boarded my train again, and together, we rolled through the fields of life where sunshine streams and set a new destination, a land of hope and dreams.”
The HDSA San Jose Team Hope 10K Run & 5K Walkis usually held at Campbell Park on the Los Gatos Creek Trail, but due to the Coronavirus, the event was changed to a VIRTUAL fundraiser.
FUNDRAISE FOR PRIZES!
Due to the economic impact of COVID-19, we anticipate raising most of our funds through peer-to-peer fundraising. And we want to reward you for your hard work and effort!
Local RAFFLE: (gift cards will be mailed)
Photo by alykat on Foter.com / CC BY
RAISE $500 & YOU’LL BE ENTERED INTO A RAFFLE FOR:
$100 Gift Card for “The Table” restaurant in Willow Glen
$100 Gift Certificate from “Sprouts Farmers Market”
MORE REASONS TO RUN & WALK
To help support and reward your amazing fundraising achievement to support the HDSA mission, HDSA is launching new Incentives!
$100+: HDSA Team Hope T-Shirt
$125+: HDSA Family is Everything Brandanna (facecovering)
$500+: HDSA Team Hope Contigo Water Bottle
$1,000+: HDSA Portable Cooler Totebag
$2000+: HDSA Stadium Blanket
The T-shirts and Face coverings will be shipped on a regular basis as the fundraising goals are met. The water bottle, cooler and stadium blanket will be shipped in December for fundraising achievements through November 30, 2020.
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
May is Huntington’s Disease Awareness Month. #LetsTalkAboutHD
In 2016, I asked Fran, my daughter-in-law, and Vanessa, my daughter, to run in the New York City Marathon on the Huntington’s Disease Society of America (HDSA) TEAM. New York Road Runners offers blocks of guaranteed, non-complimentary entries to qualified and selected nonprofits through the Official Charity Partner Program of the TCS New York City Marathon. https://www.nyrr.org/getinvolved/charity-partners/charity-partners-tcsnycm
Both of these women run marathons, 10K’s and half marathons so they were excited to apply and make money to help in the fight against the cruelest disease on the planet, Huntington’s disease.
The nonprofit, HDSA, participates in the TCS New York City Marathon Charity Partner Program. Fran and Vanessa had to apply to HDSA and commit to raising $3,500.00. Approximately 20 people were admitted to run on the HDSA Team and the team raised over $100,000.00.
Approximately 50,0000 people run the marathon. The event was very organized and the city was packed with bystanders. As they ran through the New York boroughs, people where partying and screaming and clapping for the runners. These two woman cut 10 minutes off their Marathon time because of all the support as they ran.
John, myself, Keith, Scott, Dawn and Jim Garret flew to NY and we all cheered them on. It was a blast and both Fran and Vanessa raised together $8,000.00
I’m also 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, my inaugural book. It’s an inspirational love story while living with the uncertainty of my husband, John, inheriting the fatal brain disorder, Huntington’s disease, which has no cure. What is Huntington’s Disease?
Goodread gave my book a review and said, “A poignant remembrance of a love forged in crisis”.
My story is about the power of HOPE than the wages of Huntington’s. It may sound strange to most folks, but my marriage was actually fortified by its precariousness—I learned to love more deeply in the shadow of John’s mortality. Knowing that my world could change overnight taught me to live MINDFULLY each and every day and never take John, our life, our love for granted. Living with this huge uncertainty also taught me to FORGIVE,LOVE UNCONDITIONALLY and NOT SWEAT THE SMALL STUFF.
“A true story that is as uplifting as it is heartbreaking”. KirkusReviews
HDSA 2019 Convention
Through this experience I learned that, We Can Never Lose HOPE
As of May 7, 2020, John and I are donating 100% of the book purchase price to the nonprofit, Huntington’s Disease Society of America (HDSA). To date, John and I have donated over $15,000.00, the book profit, to help in the fight against Huntington’s disease. My Author Website, where you can purchase the book, is https://theresecrutchermarin.com
John and his sisters, Lora, Marcia and Cindy don’t know a lot about her, their father never discussing her with them. So, I too, know very little but here’s what I do know.
She was admitted to Napa State Mental Hospital around 1950 on a part time basis. At that time she had two babies, Lora and Marcia, and she could not care for them. The doctors did not know what was wrong with her, and because she came home, she had two more children, Cindy and John. When Cindy was born, she was given to John’s Aunt Adeline and when John was born he was given to his Aunt Connie because Phyllis was unable to care for four children under the age of five.
Lora, Marcia & Cindy
Lora and Phyllis
She died in 1968 of strangulation as she got tangled up in the restraints the hospital had on her because her chorea was so bad. The underlying cause of her death was stated to be Huntington’s Chorea. History of Huntington’s Disease
This is such as sad story, but not unusual as Huntington’s disease family stories are always heartbreaking.
May is Huntington’s Disease Awareness Month and I write today to honor Cynthia Ann Marin, the third sister-in-law stolen from us by the insidious Huntington’s disease (HD). What is HD
Cynthia Ann Marin
Cindy moved to Canada in 1974, to get away from the smog and millions of people in California. When I met John, she was as a dental assistant in Surrey, Canada, just above the Canadian border. John called her a “free spirit” and the positive force in their family. Like John, she had a wide smile and hazel eyes, and there was no denying their kinship. I always thought of her as a wander lust being because she traveled the world whenever she had enough money.
Cindy inspired me with her free spirit attitude, her passions and her focus on living life as happy as possible. She taught me about mindfulness and living in the moment, something she was very good at.
John and I thought she would be the one sister who would miss the Huntington’s disease bullet. Lora and Marcia had symptoms in their 30’s and when Cindy turned 41, we thought she was free of HD. Unfortunately, that was not the case. She began losing weight and her gait was very unsteady and she weaved when she stood still. I cried a river when I knew the HD monster found her. She was diagnosed in 1994.
John and I miss her everyday and wish we could have grown old together. On June 4th, 2020 Cindy would have celebrated her 68th birthday. #LetsTalkAboutHD Cynthia Ann Marin’s Obituary