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.
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
Upcoming Events › All Chapters
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…Find out more »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT Kate Eichinger, DPT, and Johanna Hamel, MD. Presented by Johanna Hamel, MD, and Kate Eichinger, DPT, from the University of Rochester Medical School. When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What does the future look like? Will I need to use an orthotic brace? How long do I have before I need to use a walker…Find out more »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this month is our very own Jamshid Arjomand, PhD, chief science officer. He'll update you about the latest research and drug development advances (that he's allowed to talk about). If you have questions about FSHD research, now's your chance to get them answered! Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts,…Find out more »