Welcome to the Pacific Northwest Chapter!
Thank you for visiting the Pacific Northwest 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.
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Pacific Northwest Walk & Roll to Cure FSHD - Fall 2021!
PNW Chapter Meeting Info
On August's virtual chapter meeting, we discussed the PNW Walk & Roll to Cure FSHD and then had a great discussion sharing our "First Freedoms" - all the things we can't wait to do once it's safe to ventyre out again!
Check out the shared ideas here: PNW FSHD Mtg 8.29.2020
In June we celebraed World FSHD Day together! Connecting with each other and raising awareness on social. It was a great time!
You can review our PPT to learn more: FSHD Meeting June 2020
On May's virtual chapter meeting on Zoom we shared "Life Hacks", tips, and resources. It was a fantastic conversation with many contributing.
Check out the shared ideas here: FSHD Spring Meeting May 2020
Pacific Northwest Chapter in Pictures
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To contact us directly, please email:
PacificNWChapter@fshdsociety.org
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Upcoming Events
Mar
8
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. At last month's meeting, we had a…
Find out more »FSHD Society Radio with Carlos Romero
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this evening is Carlos Romero, who has amazed us over the past several years by becoming a national paraclimbing champion and being featured in People magazine for losing 225 pounds following his FSHD diagnosis in 2012. He recently started his own podcast, Crappy Comics, a "podcast about comedy and courage." We can't wait to catch up with him! Join host Tim Hollenback on…
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Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
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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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