Welcome to the Pacific Northwest Chapter!
Thank you for visiting the Pacific Northwest Chapter of the FSHD Society which officially launched in April 2019. 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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Walk & RollOur first Walk & Roll to Cure FSHD took place on Sunday, October 6th, 2019 in Bellevue, WA at the Bellevue Downtown Park. Thanks to all who came out to JOIN US!
Though our Chapter officially launched in 2019, we held a Walk & Roll to Cure FSHD in 2018 in Puyallup, WA, and raised over $20,000! Here are some photos of that great event:
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To contact us directly, please email:
PacificNWChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK!
Please join us! Simply fill out the form in the sidebar to become a member of your local chapter
Oct
30
FSHD Radio with Alan Brown of NFL films
Join host Tim Hollenback on October 30, 2019 on Facebook Live for a conversation with the fantastic Alan Brown. Originally scheduled for July 31, the show had to be rescheduled due to technical difficulties. Alan, of Holicong, Pennsylvania, is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and documentaries for and about the National Football League (NFL). Alan Brown of NFL Films. Alan has FSHD in his family. “My great-grandmother, grandmother, mother and…
Find out more »Nov
16
New York City Family Day Conference
New York Athletic Club Presidents Room 180 Central Park South New York, NY 10019 Advance registration required. Please click the button below. Deadline November 11, 2019. REGISTER Download the speaker list. Join us for our first-ever New York City FSHD Family Day Conference to meet top researchers, clinicians, fellow patients, and family members. You’ll hear about ongoing clinical trials and connect with the outstanding team at Columbia University Medical Center. Speakers include Michio Hirano, MD, co-director of the CUMC Muscular Dystrophy Association…
Find out more »FSHD Radio – November show
Join radio host Tim Hollenback via Facebook Live! on Wednesday, November 20, at 9:00 PM EST for TBD.
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SUSIE KANEWSKE
Chapter Director
Hello! I am excited to lead the inaugural Pacific Northwest Chapter. Full bio coming soon!
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