The wine tasting event supports the nonprofit, Huntington’s Disease Society of America (HDSA), that is dedicated to improving the lives of everyone affected by Huntington’s disease and their families. http://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 usually 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 inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
There is NO CURE for Huntington’s disease or Juvenile Huntington’s disease.
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.
A VIRTUAL walk is a real walk, but on your terms: You get to choose your own course, you can walk in your driveway, neighborhood, in your house and even on treadmill!
Sign up now and participate in the virtual walk by raising money and awareness. Your family, friends,colleagues and health care providers can join your Virtual Team Hope Walk on MAY 2nd, 2020, 10 AM (PST).
*Join the HDSA Familyon May 2nd as we kick offHuntington’s Disease Awareness Month with the LARGEST TEAM HOPEEVENT EVER!
Please click on Title, above, to find virtual Huntington’s disease resources and the video, HDSA’s “Here’s The Deal” tackles important topics to help you navigate through your journey with Huntington’s disease (HD). In this episode Jennifer Simpson, LCSW sits down with Dr. Victor Sung & Dr. Arik Johnson to discuss COVID-19 & HD.
LOCAL HDSA EVENTS
Due to social distancing requirements, all of HDSA’s in-person events and fundraisers through April 30th are postponed. Additionally, many May events are also being rescheduled. We encourage you to visit the event calendar at HDSA.org for the most up-to-date information about events in your community.
Importantly, HDSA’s Team Hope Walk Program is going virtual!
Valentine’s Day is upon us and I have had 44 years to celebrate this day with him. I’m thankful for John Anthony Marin, the love of my life, my husband, lover, father of my children, confidant, touchstone and the kindest, most honest man I’ve ever known.
In 1979, I decided to marry John, even with his unknown gene status, because I couldn’t fathom life without him. I embraced the uncertainty which enriched my life and fortified my marriage.
Each year, Valentine’s Day validated the love John and I shared. I secretly rejoiced in enjoying another year with John with no Huntington’s disease symptoms. Read about our love story: https://theresecrutchermarin.com/my-story/
This day also reminded me to stay vigilant, living mindfully, not sweating the small stuff, never taking John for granted and the wonderful life we had together.
I have never regretted marrying John, even with the heartache we have experienced with the loss of his three (3) sisters to Huntington’s disease. We are blessed that John tested negative in 2016 for the Huntington’s disease mutated gene.
The volunteers for the new San Francisco Bay Area Affiliate
The Huntington’s Disease Society of America (HDSA) has announced the formation of the new Bay Area Affiliate in HDSA’s Pacific Region. In California, HDSA’s Bay Area Affiliate extends from Santa Rosa to Gilroy counties, including the cities of San Francisco, Oakland, and San Jose.What is Huntington’s disease?
“Congratulations to the Bay Area volunteers who have tirelessly advocated to create this new Affiliate so they can bring more education, services and support to their community,” said Louise Vetter, HDSA’s President & CEO. “The addition of a new HDSA Affiliates and Chapters is critical to expanding the community-based support that HD families provide to one another.”
In 2014, the seeds were planted for this Affiliate. At the time, Natalie Carpenter was HDSA’s Pacific Southwest Regional Development Director and she was coordinating the San Francisco Team Hope Walk. The Team Hope Walk program is HDSA’s largest national grassroots fundraising event. Thousands of families, friends, co-workers, neighbors and communities nationwide walk together each year to support HDSA’s fight to improve the lives of people affected by HD and their families.
One of the people that registered for the San Francisco Team Hope event was Amy Fedele. Natalie was immediately moved by Amy’s story and passion to support the HD community.
“I read her compelling story about her mom’s fight with the disease and her gene positive diagnosis and I couldn’t stop thinking about her strength and courage,” said Natalie. “I contacted her immediately and asked her if she was willing to share her story and if she wanted to get involved with the HDSA as a volunteer and advocacy advocate.”
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.
“I volunteer my time to raise awareness and raise money to offer additional resources,” Amy explains. “I support families affected my HD, like my 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 her aunt who passed away due to complications from HD. Amy is her mother’s caregiver and, luckily, Amy’s brother tested negative for the gene that causes HD.
In 2015, Amy became HDSA’s San Francisco Team Hope Walk honoree.
HD Advocate Amy Fedele
“Since then Amy has chaired the Team Hope Walk and helped with any HDSA Bay Area event,” Natalie explains.
In 2016, Amy wanted to form more events in the Bay Area, so she went out to build more relationships and find new supporters to join the fight against HD.
“We spoke frequently about the goal of creating an affiliate once we found the right committee and support system in place,” said Natalie.
However, in March of 2017, Amy would have another battle to face: stage two triple positive breast cancer. She needed multiple surgeries and went through chemotherapy. According to Amy, this made her stronger and fight harder.
In that same year, Amy was awarded HDSA’s National Person of the Year. She was also awarded the San Francisco 49ers Community Quarterback award for her community volunteer work with HDSA. Since then, the 49ers have been involved with the San Francisco Team Hope Walk.
Finally, in 2018, Amy was cancer-free. “Amy is a force of nature and I feel truly blessed to have met her and I am very honored to call her my friend,” said Natalie.
As Natalie was transitioning into a new role on HDSA’s National Development Team, Amy had another ally in making the HDSA
Author Therese Crutcher-Marin
Bay Area Affiliate a reality: Therese Crutcher-Marin.
Therese married into a HD family and witnessed the symptoms firsthand. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.
She would later become a hospice professional and caregiver. She wrote a non-fiction book called Watching Their Dance: Three Sisters, a Genetic Disease and Marrying Into a Family At Risk for Huntington’s. For information about the book, click here. She donated all the profits from the book to HDSA. Since 2017, more than $14,000 has been donated to HDSA.
“When a challenge presented itself to Amy and me, we embraced it,” said Therese.
In 2018, Amy joined Therese on HDSA’s Northern California Chapter board to learn more about HDSA’s local governance and programs. By the end of 2018, she had learned a lot with the Chapter and was ready to start an Affiliate specifically for the Bay Area.
In that same year, Natalie, now Assistant Director of Donor Services with HDSA, held an HDSA “Great Gatsby” event in Sonoma, California. At the event, Amy met Vic and Kim Aul. Both expressed interest in joining the potential Affiliate.
Amy and Therese also have working relationships with University of California, San Francisco and Stanford University. Both are a part of HDSA’s Centers of Excellence Program that provide an elite team approach to HD care and research. Professionals at these Centers have extensive experience working with families affected by HD and work together to provide families the best HD care program. Amy and her mother are patients at the University of California, San Francisco.
With the assistance of Denny Cone, HDSA’s Pacific Regional Development Manager, the application process for HDSA’s Bay Area Affiliate began and was accepted a year later. The Board includes thirteen members. Therese will be the Chair of the Affiliate and Amy will be the Co-Chair. To see the full list of members, click here.
“As Chair of the Affiliate, my goals are to promote services available to HD families, generate dollars to increase services, heighten HD awareness and guide families into the HD community so no one has to ever feel alone,” Therese explains.
In this coming year, Amy and Therese are looking forward to building a presence in the Bay Area community. The Affiliate is looking to HDSA’s National Youth Alliance (NYA) to assist with reaching new families and have a NYA member on the board.
Established nearly twenty years ago, the HDSA NYA is HDSA’s nationwide youth program providing support, services and community to children, teens, and young adults affected by HD. With regional retreats, youth social workers and an annual event at the HDSA National Convention, the NYA is the most experienced youth support program for the HD community.
“I want the NYA to be the voice of the youth in the Bay Area and talk to people their age,” said Amy. “I want them to be a big part of the Bay Area Affiliate, because our youth is the future.”
The future is bright for the HDSA Bay Area Affiliate. As Amy explains, “We have had successful events and want to bring more support in the Bay Area. My goal is to get more sponsors in the area and have one big event. The only way we can accomplish this is if we can do this together.”