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By Matthew Santamaria (msantamaria@hdsa.org)

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.

The Bay Area affiliate is one of ten chapters/affiliates in HDSA’s Pacific Region.

“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.

“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 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.”

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Huntington’s disease 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. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org