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Bay Area Chapter

Home / Connect / Local Chapters / Bay Area Chapter
Bay Area Help and Hope

Welcome to the Bay Area Chapter!

Thank you for visiting the Bay Area Chapter of the FSHD Society! We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.

Join us for the 2023 Walk & Roll to Cure FSHD

REGISTRATION IS OPEN!

Mark your calendar for Sunday, September 24th, 2023 for our Annual Bay Area Walk & Roll to Cure FSHD. Location to be announced soon! Walk & Roll to Cure FSHD is an event that unites the FSHD community to raise awareness of FSHD and move us closer to our goal of disease-modifying treatments to families by 2025. Help us meet our fundraising goal of $50,000 this year and light the way to a cure!

Learn more about the 2023 Walk & Roll to Cure FSHD here!

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Sharegiver Hour

To all who are caregivers to FSHD loved ones! Mark your calendars, our Sharegivers Hour is held on the 4th Tuesday of every month from 8-9pm EST. You will find this to be a safe place to share and listen to each other about our day to day situations. We invite you to join us!

Go to the Event Calendar to sign up.

Volunteer Spotlight: Sue & Kent Drescher

Meet your local Chapter Directors, Sue & Kent Drescher! Hear them talk about their journey with FSHD, their advice to others, and their hopes for the future.

https://www.fshdsociety.org/wp-content/uploads/2021/06/drescher.mp4

To contact us directly, please email: BayAreaChapter@fshdsociety.org

Don’t forget to follow us on FACEBOOK

Please join us! Become a member of our Chapter in the sidebar.

Upcoming Events

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September 2023

Thu 21
FSHD University Logo
Featured Featured Sep 21 @ 1:00 pm - 2:00 pm

FSHD University – Physical Therapy for Shoulder Issues in Kids

Zoom Web Conference , United States

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Maaike Pelsma Join Maaike Pelsma, a pediatric physical therapist, to learn about shoulder dyskinesia in children... Read More »

Sat 23
International Celebration with FSHD Radio
Featured Featured Sep 23 @ 9:00 am - 12:00 pm

International Walk & Roll Celebration with FSHD Radio

National Virtual Walk , United States

10:00 AM ET | 9:00 AM CT | 8:00 AM MT | 7:00 AM PT Tune in as FSHD Radio podcast host, Tim Hollenback, interviews Walkers and Rollers during our... Read More »

Sat 23
Featured Featured Sep 23 @ 10:00 am - 11:00 am Event Series Young Professionals

Young Professionals – Nutrition and FSHD

Zoom Virtual Meeting , United States

11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT How does nutrition impact the symptoms and progression of FSHD? This week, the group will... Read More »

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Kent & Sue Drescher

KENT & SUE DRESCHER

Chapter Directors

Kent: I was diagnosed with FSH in 1982, and by that time, I’d already had some of the symptoms for about 10 years. Sue & I attended our first meeting of the Society years ago, and for me, that was the very first time I ever met somebody else with FSH, and it was amazing.

Sue: It’s been really great to meet each other and our families, and talk about support. What we’re hoping for is a building of that community.

We are both recently retired. Kent spent 27 years as a clinical psychologist at the VA hospital, and continues to be involved in some related research and writing. Sue retired from a tech company, and has been enjoying having extra time to spend with family. Sue also recently taught a class in healthy cooking for cancer survivors at a Kaiser in Santa Clara.

Stay Informed on Chapter Activities!

Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of your local chapter and you'll never miss a meeting or event notice.

When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.

If you want to know more about this and why it is so important, learn more HERE

Your personal information will be kept strictly confidential.

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General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

FSHD Society
P.O. Box 411617
Boston, MA 02241-1617

(781) 301-6060

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