The dollars from this fundraiser supports the nonprofit, Huntington’s Disease Society of America (HDSA)’s mission to help everyone affected by Huntington’s disease and their families by providing local services and programs in the San Francisco Bay Area.
We Can Never Lose HOPE…………….
Amy Fedele and myself at the HDSA NorCal Chapter Team Hope Walk
If you haven’t been to Chico California, make a day of it starting with the HDSA Chico Team Hope Walk. Then after the fundraiser, check out Sierra Nevada Brewing Company in Chico, take a tour and also have lunch or dinner at their restaurant. https://sierranevada.com/beer/
The Chico Team Hope Walk begins 9 a.m. and the cost is $25.00 and if you registered by 4-1-19, you will receive a T-shirt.
The Team Hope Walk program is Huntington’s Disease Society of America’s (HDSA) signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease, Huntington’s disease (HD). HDSA is a premier nonprofit improving the lives of everyone affected by Huntington’s disease.
All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families. http://www.hdsa.org
Huntington’s disease (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 during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. #HDSA
John and I will be helping with the event and I’ll also be selling my nonfiction book, Watching Their Dance, at the event. 100% of the profit is being donated to HDSA. So far, I’ve gifted $14,100.00 to HDSA.
And I’ll email you the first chapter of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s a nonfiction/memoir. Author Website: http://www.theresecrutchermarin.com
The huge uncertainty I chose to live with, John had an unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet, caused a huge CHANGE in my life. His 50/50 chance of inheriting this rare, fatal, incurable brain disorder that is like having ALS, Parkinson’s and Alzheimers symptoms at the same time taught me to live in the moment, to live mindfully, which enriched my life.
Through the years, my heart opened up to forgive more easily which lead to loving unconditionally. Even with the sadness John and I experienced, my three sisters-in-law died of complications from HD, made me appreciate and be grateful for everything I had in my life.
Therese is the author of the nonfiction, Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease. Therese has received four excellent book reviews from Kirkus, Goodreads, BookLife and Stanford University. To read the reviews, go to: https://theresecrutchermarin.com/goodreads-review/
In the United States, the Rare Diseases Act of 2002 defines rare disease strictly according to prevalence, specifically “any disease or condition that affects fewer than 200,000 people in the United States”, or about 1 in 1,500 people.
With that said, Huntington’s Disease (HD) is a rare disease since it affects approximately 30,000 people in the U.S. What-is-HD
The poster child for HD is the famous folk singer Woody Guthrie who died of complications from HD on October 3, 1967. Marjorie Guthrie was instrumental in the quest to heighten HD awareness, and also connecting with the HD families in the United States. She started, The Committee to Combat Huntington’s Disease (CCHD) in 1967. To read more about the CCHD, go to https://hdsa.org/about-hdsa/hdsa-history/
I’m an HD advocate, having lost my three (3) sisters-in-law to the disease. I volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against this horrible disease that affects families for generations. I’m currently working with a group of HD advocates to organize a HDSA Affiliate in the San Francisco Bay Area which, hopefully, in a couple of years will evolve into a HDSA SF Bay Area Chapter. https://hdsa.org/about-hdsa/chapters-affiliates/
100% of the proceeds from Therese’s book is being donated to HDSA. Since publication, Therese has donated $14,115.00. Her author website is: http://www.theresecrutchermarin.com
Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network, offers a weekly call insupport type group. It is on Thursdays on See Me HD Group Call at 1:00 pm PT/4:00 pm ET Join from computer:https://PMDAlliance.zoom.us/j/769346544
Or Telephone: Dial: +1-408-638-0968 (US Toll) Or +1-646-558-8656 (US Toll) Meeting ID: 769 346 544
Melissa’s Facebook page and HD Support & Care Network website:
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
My sister, Jen, and our dad
John & our children & their spouses
To learn about Genentech/Roche plan, click below on video.
We Can Never Lose HOPE…….
Therese is the author of Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease. It can be purchased on her Author Website or Amazon
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.
John and my good friend Oliver Bray, who John has known since grade school, built Bray Vineyards from the ground up. Ollie lives in Martinez, where they grew up, and is a successful attorney like his father, Frank Bray. https://www.brayattorneys.com/attorney-bios
In 1996 Oliver Bray and Robin Bray established Bray Vineyards on 50 acres of prime Shenandoah Valley vine land. They have created a lovely, peaceful place, with great wine. Address: 10590 Shenandoah Rd, Plymouth, CA 95669, USA. https://www.brayvineyards.com/
Ollie, John and John’s three sisters, Lora, Marcia and Cindy went to Alhambra High School together and were all good friends. Ollie was a sponsor for the 2018 HDSA Sacramento Team Hope Walk last September. The three Marin sisters all died of complications from Huntington’s disease. John is the only survivor of a family devastated by Huntington’s disease. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1486
California-Shenandoah Valley wineries Take a day and visit the many wineries in the Shenandoah Valley and do some wine tasting. You won’t be disappointed. The wineries are in Amador County off Highway 50 before you hit Placerville California. If you enjoy the wine, you might want to be in the Bray Wine Club like we are. John and I look forward to our quarterly shipment of Bray wine.
Amy Fedele is the Coordinator for the SF Team Hope Walk. (with husband, Matt)
The Team Hope Walk program is Huntington’s Disease Society of America’s (HDSA) signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families. In 2018, 94 Team Hope Walks will be held across the U.S.
Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimer’s at the same time. There is NO CURE. It slowly deteriorates a person’s physical and mental abilities and usually strikes during prime working years. Every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. http://www.hdsa.org
Please help in the fight against HD and Juvenile HD by supporting the Walk or becoming a Sponsor. To register, http://www.hdsa.org/thwsanfrancisco or to be a Sponsor, please email Amy Fedele, Walk Coordinator at: firstname.lastname@example.org Read Amy’s story: Amy Fedele’s Story
Our society today doesn’t like to talk about end-of-life issues even though no one gets out of this life alive. Since each one of us will the confronted with our own mortality, wouldn’t you want to control what happens to you at the end of your life? You can document your wishes by filling out an Advance Health Care Directive or a Power of Attorney for Health Care. John and I have a Power of Attorney for Healthcare in our Living Will that our attorney created for us.
One way to have your family/friend abide by your wishes, when the time comes, is to have an Advance Health Care Directive form completed. It’s not just having it filled out, it needs to be distributed to your family/friend who will be your advocate and in your medical chart at your doctors office/hospital.
An Advance Health Care Directive is a gift to your family. Making end-of-life decisions ahead of time will lower anxiety, and allow the doctor to design a plan of care based on the directive.