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
Nov
20
FSHD Radio welcomes Levi Benson and Jenny Hasenjaeger
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes. Those on the listening end of the Kansas musician's performances have been…
Find out more »Dec
7
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…
Find out more »Bay Area Chapter Holiday Meeting
Please join us for our annual Holiday Chapter Meeting at the Stanford University Medical Center at the Hoover Building, Room 208 on the second floor. We welcome all FSHD patients and family members to attend this meeting! “We hope to see you there!” ~Sue & Kent Drescher, Bay Area Chapter Directors
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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