Marcia Louise Marin would have been 71 years old today. Happy Birthday, Marcia!
I celebrate this day in her memory and acknowledge the strength, courage, tenacity, positivity and kindness that Marcia showed toward me and others. She was the second child born to John and Phyllis Marin, and having a parent with Huntington’s disease (HD) Marcia had a 50/50 chance of inheriting the mutated huntingtin gene from her mother, Phyllis Iva (Cahoon) Marin.
Lora, Cindy and Marcia Marin
Marcia, at the young age of 30, was the first of my three sisters-in-law to show symptoms of Huntington’s disease. What is Huntingtons disease
Marcia’s first symptoms, that I noticed in 1980, were twitches and an unsteady gait. By the time she was 34 years old, she was retired from AT&T; unable to continue working because of forgetfulness, loss of concentration and coworkers and supervisor believing she was drunk on the job. She struggled with Huntington’s disease for 15 years and died on September 8th, 1999 at age 49.
I wish her story had been different and we could have enjoyed life together. I wish my children, Keith and Vanessa, could have had time with this wonderful person who would have been an awesome aunt.
Author Therese Crutcher-Marin
The nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s is 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. book reviews
100% of book sales is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Available on amazon and many other book websites. My author website: theresecrutchermarin.com
A global audience of nearly 4,000 tuned into the Virtual 6th Annual Freeze HD event on Saturday, September 26th which raised $200,000 to support the fight against Huntington’s disease (HD). Due to the COVID-19 pandemic, the Huntington’s Disease Society of America (HDSA) transitioned the world’s largest and most-anticipated HD fundraising event to a virtual format.
Hosted live by actor Scott Porter from a secure location in Los Angeles, Freeze HD featured an incredible online auction, live music with Brian Logan Dales fromThe Summer Set and dozens of videos from celebrities offering their support in the fight against HD.
HD is described as a combination of ALS, Parkinson’s & Alzheimer’s. This devastating brain disorder, with no cure, is known as the quintessential family disease because each child of a parent with HD has a 50% chance of inheriting the gene that causes HD.
“Each year, Freeze HD is star-studded call to action to stop Huntington’s disease in its tracks. While we missed gathering in person, hosting the event virtually reached the global HD community and allowed more families to connect and be inspired in this fight,” said HDSA’s President & CEO Louise Vetter. More about the nonprofit Huntington’s Disease Society of America
I’m a Huntington’s disease (HD) advocate having lost my three (3) sisters-in-law to this horrific, genetic brain disorder with NO CURE. I published a nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s to heighten awareness, to honor my sisters-in-law and to generate dollars to be donated to the nonprofit, Huntington’s Disease Society of American (HDSA).
“Since Lora had gone into rehab, my demons had started appearing at night. With my hormones fluctuating and the lack of sleep, my resistance had been faltering ever since Keith’s birth. Now I took a deep breath, but my throat constricted and my chest tightened. How I wished I could not worry about HD until something happened, if it ever happened. Hoping to push my terror away, I crossed my arms and squeezed my body as tightly as I could. My eyes went to my sleeping angel, and I prayed. “Dear God, protect this innocent child, who deserves nothing less than all the joy in the world. I pray I have not condemned him to a life with Huntington’s. Please help me be strong.”Struggling to hold back tears, I stood at the crib and made a solemn promise to Keith. ‘I brought you into this world, my darling child, I will always be there for you, no matter what.’”
When I’m on walks around my neighborhood, I usually listen to music on my iPod. Many times, songs spark an idea for a blog post that usually centers around an emotion, a lesson, an idea centered around Huntington’s disease (HD) and my family.
The song by U2, I Still Haven’t Found What I’m Looking For, resonates in my soul. It’s a song about searching for meaning. Bono says, “And to me, the most interesting thing about it is that you don’t find it. It’s about the search.”
The life experiences I’ve had with Huntington’s disease (HD) has sent me on a restless search for meaning and understanding of why this horrific disease devastated the (Cahoon) Marin family; my three (3) sisters-in-law, Lora, Marcia, Cindy, and mother-in-law, Phyllis Marin died from HD complications. What is Huntington’s disease
I still haven’t figured it out and it weighs heavy on my heart, but I’ve come to accept that I’m supposed to keep searching, which continuously fuels my passion to help in the fight against Huntington’s disease. I’m the chair for the HDSA San Francisco Bay Area Affiliate. HDSA San Francisco Bay Area Affiliate
Maybe, the end to my search will be when I see Lora, Marcia and Cindy again. I can always HOPE.
John and I have sold our home in Auburn, CA, that we’ve lived in for 31 years, to start a new chapter of our lives. We decided to move closer to our children, we want to move before we can’t move, as we will be first time grandparents in February 2021.
Purging, as I call it, is daunting after living that long in one home. So, as I combed through each closet, drawer and way back in a cabinet I found LOVE LETTERS John wrote to me after I walked away from the relationship during our last year in college. The letters were endearing and brought tears to my eyes as John expressed his love for me. I’d left because of the discovery that his mother had had Huntington’s disease (HD) and John had a 50/50 chance of inheriting the mutated huntingtin gene that causes the disease. What is HD?
John and I ask for your pledge to support Huntington’s Disease (HD) research to help families like mine. John and I lost his three (3) sisters, mother, aunts, uncles and cousins to this horrific disease that has NO CURE. What is Huntington’s Disease
Sign up for the 14th Annual San Francisco VIRTUAL Team Hope Walk this Saturday, October 3rd, or make a donation to help in the fight against HD. https://www.hdsa.org/thwsanfrancisco
A virtual walk is a real walk, but on your terms: You get choose to your own course, you can walk in your local park, hiking trail, driveway, neighborhood, or in your house and even on treadmill! Invite your friends and family to be on your team, they can walk with you wherever you are.
The San Francisco Virtual Team Hope Walk is coming up this Saturday, October 3rd! Please DONATE or PLEDGE to support my friend, Amy Fedele, as she and her family walk to support Huntington’s Disease research.
Amy was diagnosed with the gene that causes Huntington’s disease (HD). 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. More about HD
She volunteers her time to raise awareness and raise money to offer additional resources. She supports families affected by HD, like her own, so they never feel alone in their fight against HD.
Amy’s mother also tested positive for HD, as well as her uncle and aunt who passed away due to complications from HD. She’s her mother’s caregiver and, luckily, her brother tested negative for the gene that causes HD.
To make a donation to Huntington’s Disease Society of America (HDSA), click here: DonateHere
Author Therese Crutcher-Marin
100% of the proceeds from the nonfiction book I published, is donated to HDSA. Since publishing, I’ve donated over $16,000.00. Buy it on Amazon: AmazonWatchingTheirDance
Hold your Yodel, not all Oktoberfest events are canceled for this year… That’s right; have we got a treat for you!
You may not be able to be at your favorite festival with several hundred of your closest friends, family, and neighbors but you sure can still enjoy craft beer! Oktoberfest is most definitely one of those times that we look forward to gathering in the Fall for this amazing German tradition with great food, music and of course beer.
We will gather with Nathan, owner of Angry Horse Brewery and learn a little bit about what goes into making incredible beer and the fixings to go with it! You don’t even have to leave your doorstep. Just click on the link, place your order and Angry Horse will ship your “tasting pack” straight to your home. Simple, fast and easy and all for a great cause! Angry Horse is graciously donating their time, talents and all proceeds for this event will go back to Huntington’s Disease Society of America to support families with Huntington’s Disease. http://hdsa.org
Although Angry Horse has a full selection of beers, here’s a little peak of a few beers we will be tasting:
Oktoberfest A dark colored lager traditionally brewed in March and fermented throughout the summer Months. This Marzen style beer has rich malt flavors, subtle hops and is easily drinkable.
Hay-z A New England Style IPA with Aromas of papaya, raspberries and pine are accompanied by hearty, bread-y notes.
Regal Beagle – Blond Ale A delicate ale. The English hops produce notes of oolong tea and subtle hints of orange. Earthy undertones.
Purple AF (And Fermented) – Hibiscus Saison A delicate ale. The English hops produce notes of oolong tea and subtle hints of orange. Earthy undertones. This a bonus “featured” beer that will be available to purchase as an optional add on.
The Beast – Belgium Golden Strong (Only availble with “Oktoberfest Box” purchase) The Beast, our Belgian Golden Strong Ale comes in at 8.5% ABV. It’s spicy and distinctive with a strong ester profile. The big fruity flavor and artfully balanced hop character opens up to warming alcoholic touch. It debuted as a limited edition at Los Angeles County Beer Week in 2017.
In 2017, I conducted an interview with Kate Miner. One question I asked:
Tell us about your involvement in Freeze HD and other ways you are trying to educate people about the disease.
Kate: We decided to host a fundraiser as a sort of coming out party to our family and friends many of whom, like us, had no idea what HD was before it affected our family. We rented out a fun music venue in Echo Park called The Bootleg Theater and proceeded to raise over 200k. The event brought out big names like Academy Award winner Annette Bening and an array of television stars. Kate Miner FB page