Please join HDSA volunteer Amanda Shrewsbury, yoga certified instructor, for an hour of peaceful yoga on Saturday, August 22, 2020. It’s FREE to join and it is virtual so after signing up you will receive a zoom link.
The HDSA San Francisco Bay Area Affiliate wanted to hold an event that could calm folks during this pandemic, which we have never experienced before. COVID-19 creates stress in our lives; families are out of work or working at home and trying to teach their kids. Communicating with loved ones and friends is virtual now and hugs are out of the question.
Caring for a loved on with Huntington’s disease (HD) is stressful enough, and very isolating, and COVID-19, compounds the worry. HD is a rare, fatal, genetic brain order that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time and there is NO CURE. What is HD?
I’m the Chair for the HDSA San Francisco Bay Area Affiliate and we are hosting a new virtual event to help with the stress, at least for a little while.
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
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
UMay is Huntington’s Disease Awareness Month and I write today to honor Marcia Louise Marin, the second sister-in-law stolen from us by the insidious Huntington’s disease (HD). What is HD
Marcia Louise Marin
Marcia was twenty-six when I met her. She was shy but sophisticated, glowing with gentility—the first woman I knew who looked chic in jeans, maybe because she had them dry-cleaned. Her light brown curly hair and makeup were always impeccable.
Neither Lora or Marcia attended college; after Marcia graduated from high school, she’d gone to work in San Francisco in the typing pool at Pacific Bell. But she was smart and ambitious, and ten years later, her title was Marketing Representative.
In 1985, Marcia was in a terrible auto accident and retired from Pac Bell. Her co-workers though she was drunk on the job because she fell off her high heels and she couldn’t remember things. The next year, Marcia was diagnosed by neurologists with Huntington’s disease at the University of California, San Francisco.
It was a tremendous blow for all of us but, unfortunately, I had seen symptoms in Marcia for about three years; twitches, losing her balance, taking falls. #LetsTalkAboutHD
John and I miss her everyday and wish we could have grown old together. On October 25, 2020 Marcia would have celebrated her 71st birthday.
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.
For more information and resources, please visit http://www.HDSA.org. The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.
In the battle against Huntington’s disease no one fights alone. At HDSA, family is everything.
Lora, Marcia and Cindy Marin, my three (3) sisters-in-law, who died from Huntington’s disease (HD) complications, are never far from my thoughts.
I’m a HD advocate for many reasons and first and foremost it is because I want to honor these three (3) beautiful women whom I loved. John, my husband, and I miss them everyday and wish we all could have grown old together and celebrated many more Christmas’s, Thanksgiving’s and birthday’s.
HDSA 2019 Convention
Huntington’s disease, a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s, and Alzheimers at the same time. This disease has no cure and devastates families for generations. It’s an insidious disease because when a parent has the disease, every child has a 50/50 chance of inheriting the mutated HD gene that causes the disease. More about Huntington’s disease
I’m a volunteer for Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of HD families. I’m currently the Chair for the HDSA San Francisco Bay Area Affiliate and I work with a fabulous team of HD advocates to heighten HD awareness and raise money to fund local services like HD support groups, the Centers of Excellence at Stanford University and University of California, San Francisco, HD Education Days and research. http://hdsa.org
100% of the profits from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). To date, I’ve donated $15,000.00 to HDSA, the profits since I published.