From John and myself.
Have a wonderful Christmas with family and friends.
We Can Never Lose HOPE
I found a few pictures from my childhood and posted them, they’re black & white which really shows my age. I reminisce as I look at them and they bring a smile to my face.
Growing up, my parents always listened to the Ray Conniff Christmas record. I bought that same record, a few years back, only as a CD and it sure brings back memories as I listen to it.
Have a wonderful Holiday Season with Family and Friends.
To listen to the Ray Conniff Christmas record, visit: https://youtu.be/27lOcKkmXYM
Merry Christmas to All and to All a Good Night.
In a previous blog, I wrote about Social Security Disability Insurance and the difficulty Huntington’s disease (HD) families experience when applying for benefits and how for a HD family, who might have two (2) or more family members struggling with the disease, disability dollars are essential for their financial survival. https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/
Applying for Social Security: https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd/disability-support/
I know a family in town where multiple members are struggling with HD; mom and three (3) adult children who have Juvenile Huntington’s disease. The father/dad, a physician is still working, and is the caregiver for his loved ones at home. To have disability benefits for these four loved ones is, no doubt, helpful.
Another family challenged by HD is the O’Donnell Family. A film by Rae Maxwell and produced by HDSA, Her Mother’s Daughter, introduces the world to Kathi O’Donnell and shows the devastating impact that Huntington’s disease (HD) & juvenile Huntington’s disease (JHD) has had on the O’Donnell family. The film is a window into Kathi’s inspiring journey as a caregiver as we see the different stages of HD & Juvenile Huntington’s disease – a rare form of HD that progresses more rapidly than adult onset.
To watch the film, click here. https://youtu.be/zXfDJ2aW4hw
We Can Never Lose HOPE……
I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease. As of January 1, 2020, a HDSA San Francisco Bay Area Affiliate will begin operating. Amy Fedele is the Co-Chair, I’m the Chair. The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.
My author website is: https://www.theresecrutchermarin.com
You can read about my HD journey and the book I published, Watching Their Dance. 100% of the profits are being donated to the nonprofit, HDSA.
In 1988, when two of my sisters-in-law, Lora and Marcia Marin were struggling with Huntington’s disease (HD), I became obsessed with increasing John’s Life insurance. He was employed by Placer County and as a manager he received a free $50,000.00 life insurance policy. What is HD
To protect my family and to lower my anxiety, I felt $50,000.00 was inadequate, because of John’s at risk status for HD, and set my sights on securing a private life insurance policy for John.
Well, I wish GINA had been established at that time because I applied to ten (10) Life Insurance companies and John was denied by all of them. The Genetic Information Non-Discrimination Act (GINA) created new protections against the misuse of genetic information by health insurance companies and employers. Go here for FAQ’s about GINA. what-is-gina-and-when-does-it-take-effect
I remember the question that was on the applications that was the cause the denial: “If a parent is deceased, what was the cause of their death?” I wrote, “Huntington’s disease”.
We Can Never Lose HOPE……..
Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on Therese’s author website https://www.theresecrutchermarin.com and many book websites like Amazon
On this day, the beginning of the new year, I want to take a moment to be thankful, and to remind myself to continue having forgiveness & hope in my heart, and to keep kindness and mindfulness in my everyday activities.
2019 is here and what a great year 2018 was for my family as my father is healthy at 89 years old and my sisters and children are also healthy and happy. It has been a joyous year for the Huntington’s disease community; with the positive outcome of Ionis HTTRx drug and Genentech/Roche moving quickly to setup clinical trials around the world for the now HG6042 drug. Ionis HTTRx program and its future
To learn about Genentech/Roche plan, click below on video.
We Can Never Lose HOPE…….
100% of the profit from the book is being donated to the nonprofit Huntington’s Disease Society of America (HDSA). December 2017, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.
In the 1960’s, when my three sisters and I were growing up in Shawnee Mission, Kansas, my parents, Jim and Rita always made Christmas special for their children. Since we were a Catholic family, the focus was on the birth of Christ. Every year, my mother brought out the Advent Wreath that held three purple candles and one pink, designating the four weeks before Christmas. Before dinner, we said our prayer and then lit the appropriate candle(s). The themes of Advent are hope, peace, joy and love.
I have fond memories of Christmas Eve; dinner and presents at my Grandparents home, midnight Mass and a life size Nativity scene in the hall outside St. Pius Church entrance.
May your holiday be filled with hope, happiness, love and family memories, new and old.
We Can Never Lose Hope…..
My wish is to experience Christmas in another country without the commercialism and hype that we see in the United States. Quite frankly, I’m tired of blow-up snowmen displayed on lawns and the Christmas ads on TV before Halloween.
Since John and I are retired, we left on November 29th and flew into Lisbon, Portugal and began a journey traveling through Spain, France and into Italy, arriving December 18 . We booked a 9- bedroom villa, Villa Luisella, for a week for all of us to enjoy together. Cortona is a town in the province of Arezzo, in Tuscany, Italy. It is the main cultural and artistic center of the Val di Chiana after Arezzo. Discover Tuscany-Cortona
We Can Never Lose Hope……
In Chapter 26, page 206, John and I take Aunt Marcia, Keith and Vanessa on a Christmas adventure to cut down a Christmas tree and on the way home we stopped and had hot chocolate. It’s a positive memory my children have with their Aunt Marcia who was struggling with Huntington’s disease.
“Two weeks before Christmas, we treated Marcia and the kids to a surprise. We loaded everyone into the van and headed to McBurney Christmas Tree Farm, just outside Grass Valley. We slid a Mickey Mouse Christmas cassette into the tape player, and Keith and Vanessa sang The Twelve Days of Christmas all the way there. Just as we pulled into the parking lot, snow began falling, setting the stage for a perfect day. John turned around and said, ‘You guys get to pick out your very own tree this year, and then you can help me cut it down.’
Keith’s eyes grew big. ‘Do I really get to help chop it down, Dad?’
Watching Their Dance, an inspiration love story while living in the shadow of Huntington’s disease. 100% of the proceeds from the book is being donated to the nonprofit, Huntington’s Disease Society of America. It’s available on Therese’s author website https://www.theresecrutchermarin.com and many book websites like Amazon
Many of you may not know that Kate Miner, actress, musician, Huntington’s Disease (HD) Advocate has HD in her family. Her mother, and two sisters tested positive. Kate tested negative. What-is-HD?
Last year, when I was publishing my book, Watching Their Dance, I reached out to Kate requesting a book jacket comment. She graciously agreed and her comment appears on the front cover. Kate and her husband are supporters of the HDSA FREEZE HD event that was held on Sept. 22, 2018 in Los Angeles.
A few days ago, I found this awesome film, The Race, that includes Jenne Coler-Dark’s HD story, Kate Miner’s sister and who is gene positive. Read Jenne Coler-Dark’s Story
The film is about a young, idealistic Huntington’s Disease researcher who comes face-to-face with three generations of a family devastated by the fatal, incurable disease she studies. For the scientist, who has never met anyone with Huntington’s Disease, the stakes of her research become real. For a Huntington’s Disease patient at the center of the story who is watching her mother sicken, fearing her own demise, and afraid for her two kids, it’s a mother’s plea – and a race against time
To watch the film, please click on link below:
100% of the proceeds from the book are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). It’s available on many book websites like Amazon.com
We Can Never Lose HOPE……………………….