Welcome to the Bay Area Chapter!
Thank you for visiting the Bay Area Chapter of the FSHD Society which officially launched in September 2018. 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.
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The Walk & Roll
Thank you to everyone who attended and supported the 2019 Bay Area Walk & Roll to Cure FSHD on Sunday, September 15th at the Alameda Running Festival! Please take a moment to see photos from our event!
To contact us directly, please email: BayAreaChapter@fshdsociety.org
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Upcoming Events
Jan
20
Webinar on the Voice of the Patient Forum
Informational Webinar Our webinar on January 20th at noon U.S. Eastern Time will introduce our Voice of the Patient Forum (taking place on April 21) and answer your questions about how to be involved. This meeting is the FSHD Community’s platform to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will…
Find out more »Apr
21
Voice of the Patient Forum for Drug Development
This meeting is the FSHD Community’s forum to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will be submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether…
Find out more »Jun
27
2020 FSHD Connect
The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.
Find out more »
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 about 2 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.
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