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
Upcoming Events
Mar
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FSHD Society Radio with Julie Cohen, genetic counselor
Julie Cohen, MSc, genetic counselor 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!…
Find out more »Apr
1
FSHD Society Radio
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »Webinar on preparing for the Voice of the Patient Forum
Our webinar will prepare you for the Voice of the Patient Forum on April 21. The webinar is noon-1:00 pm ET | 11:00 am-noon CT | 10:00-11:00 am MT | 9:00-10:00 am PT. The Forum 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 be…
Find out more »
SUSIE KANEWSKE
Chapter Director
Hello! I am excited to lead the inaugural Pacific Northwest Chapter. Full bio coming soon!
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