From my family to yours, Happy Thanksgiving!
We Can Never Lose Hope………….
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……………………….
HD is a fatal genetic disorder that progressively destroys the nerve cells in the brain. There is NO CURE. It’s like having ALS, Parkinson’s and Alzheimer’s at the same time. http://www.hdsa.org
Fear, anger, sadness overwhelmed me at times and I’m thankful for the counselor I had and for working in the healthcare industry. I wish I could have done more for Lora, Marcia and Cindy; I did the best I could at the time. So, after 10 years, I’ve forgiven myself.
“Forgiveness does not change the past, but it does enlarge the future.” ~Paul Boes
“The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realize that the situation is over, you cannot move forward.”
― Steve Maraboli, Unapologetically You: Reflections on Life and the Human Experience
We Can Never Lose HOPE……..
John and I have been connected to the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of anyone affected by Huntington’s disease (HD) for many years.
It began long ago, 1978, when John’s family secret was discovered; his mom had HD. I’ve received newsletters and info from them for over 20 years and we have donated to the organization regularly as did John’s father. http://www.hdsa.org
So, I’m shouting out about the HDSA Northern California Chapter’s fundraiser on Sept. 8th, the Sacramento Team HOPE Walk. John and I have created “The Marin Team” and want to raise $1,000.00. Here’s the link to register for the Walk or to make a donation to the event. Any dollar amount is helpful in the fight against HD. (HD is a fatal, genetic brain disorder that affects children & adults & there is no cure. It’s like having ALS, Parkinson’s & Alzheimer’s at the same time.) http://www.hdsa.org/THWSacramento
Another link directly to “The Marin Team” page: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=44954
In January of 1988, after Vanessa was born, John and I decided that I wouldn’t return to work and stay home for a couple of years while the kids were young. John was making good money at Placer County, and we had money in our savings account, so I was comfortable living on one paycheck. A Walkthrough Guide to Panic Disorder
At the time, I had two sisters-in-law, who lived locally, challenged by Huntington’s Disease (HD); Lora, severely depressed and drinking herself to death and Marcia, officially diagnosed at UC SF Medical Center two years earlier. What is HD A few months after I resigned from my management job in Sacramento, I began having panic attacks. John’s unknown gene status weighed heavily on my mind. A Walkthrough Guide to Panic Disorder
To ease my anxiety, I decided to pursue a Masters degree in Healthcare Administration. Additional education, I felt, made me more marketable, and would replace time lost in the workforce. I believe knowledge is power and as I studied I became confident that I would secure a job at our community hospital in Auburn, CA which I did in 1991.
The Sacramento Team HOPE Walk is Sat., Sept. 8, at the River Walk Park in Sacramento. To register or make a donation to the event, go to: http://www.hdsa.org/THWSacramento
A heartwarming story about Natalya Gonzalez, whose family struggles with Huntington’s disease. The family lives in the County of Yolo, a county located in the northern portion of the U.S. state of California. http://hdsa.org/living-with-hd/juvenile-onset-hd/ http://hdsa.org/what-is-hd/
“A typical day for Natalya Gonzalez involves far more responsibilities and challenges than those of an average sixth-grader. The Yolo Middle School student balances schoolwork with family responsibilities as she pitches in at home to help her mother care for her father and an older sister, who both suffer from Huntington’s Disease, a debilitating genetic disorder.” Full article: Yolo Student Thrives Despite Challenges
The Huntington’s Disease Society of America Northern California Chapter is organizing a Sacramento Team HOPE Walk to help families, like the Gonzalez’s. Come out and walk on Saturday, Sept. 8th, at the River Walk Park in West Sacramento. To sign up or donate to the event, go to http://www.hdsa.org/THWSacramento
We Can Never Lose HOPE….
When I made a conscious decision to marry John, despite his unknown gene status for Huntington’s disease (HD), I knew full well the possible consequences of my decision. I was only 23 at the time, very naive, and didn’t really understand the ramifications of this horrific disease. HD is a fatal, genetic disorder that progressively destroys the nerve cells in the brain. There is no cure. http://www.hdsa.org
With the 50/50 chance of inheriting the disease, I knew, based on statistics, that at least two (2) of the four (4) Marin siblings would carry the mutated huntingtin gene. Who is at risk: http://hdsa.org/what-is-hd/#risk
But, what I didn’t realize, was that it would be so hard, so emotionally depleting, so sad in so many ways.
My advice to those struggling with a challenging issue, like Huntington’s disease, is to:
Last week, the HDSA Northern California Chapter Board members met with Dr. Vicki Wheelock. Lisa Kjer, social worker, Kathryn, Huntington’s D Clinic RN at UC Davis Medical Center, HD Clinic, to brainstorm how to increase the Chapter’s community disease outreach and fundraising. https://www.ucdmc.ucdavis.edu/huntingtons/
The Chapter is dedicated to improving the lives of everyone affected by Huntington’s disease and we do this by generating dollars to help in the fight against this horrific disease that has no cure. Through our fundraising efforts the Chapter supports/funds the HD Clinic, seven support group facilitators and the HD social worker.
Kaiser Permanente HD website: https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp
The Huntington’s Disease Society of America’s slogan is, “Family is Everything” & “No one fights alone” . The Huntington’s Disease community is truly one big family. http://northernca.hdsa.org/ https://www.facebook.com/hdsanocal/
John and I have just returned home from the Huntington’s Disease Society of America (HDSA) Convention in Los Angeles, California where I promoted my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. Author Website: http://www.theresecrutchermarin.com
The question I get asked most often when I interact with folks is, “Why did you decide to write a book?” My reply is, “The motive was purely selfish because I was looking a way to heal from the loss of my three sisters-in-law to the cruelest disease on the planet; Huntington’s disease”. Article: The Healing Power of Telling Your Story
In 2008, Cindy, my third sister-in-law passed away and in 2010, I began writing my story. A counselor I’d seen for years suggested I write a book as a way to heal. Seven years later, in 2017, I held a book in my hands and could honestly say, “the process of writing my story, validated what I had gone through, and allowed me to move the grief I harbored to the pages of the book; so, yes, I have healed”.
Article on Benefits of Writing: Writing About Emotions May Ease Stress and trauma
We Can Never Lose Hope
Huntington’s Disease Society of America Annual Convention Continues:
Today, Saturday, June 9th, has many workshops to offer to attendees again. Here is the link to today’s schedule. https://guidebook.com/guide/119978/schedule/#date/06-07-2018
The morning will be spent listening to the experts at the HDSA Research Forum.
Please REMEMBER, some of the workshops will be LIVE STREAMED. Go to: https://guidebook.com/guide/119978/list/586374/
From 6- 7 p.m., is the Gala Reception and dinner and dancing goes on until 1 p.m. The Gala brings the 33rd HDSA Annual Convention to a Close.
We Can Never Lose HOPE…….