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 a Success!
Our 2020 Virtual Walk & Roll was fantastic, thanks to all of you! Our chapter overcame all the obstacles 2020 threw at us. You invited your family and friends and they showed up!
On Saturday, September 12, 2020 we joined with Chapters nationwide to celebrate in a 4-hour Facebook livestream event. It was awesome.
Did you participate? You can still earn some great rewards. The deadline for prizes is September 25th. Have some fun pictures or video to share? Add them to our google folder HERE
If you haven't had a chance to chip in, it's not too late to help us reach our goal.
Special thanks to our Platinum Walk & Roll Sponsor:
Zetterberg Home have been building homes and client relationships throughout the Puget Sound for over 50 years. We are thankful for their support of our work to empower individuals with FSHD to build community and accelerate research to find a cure.
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
_________
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
Oct
1
Webinar: COVID-19 Response Survey report
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Leann Lewis, MSGC Katy Eichinger, DPT This past spring, the FSHD Society and FSHD UK distributed a survey from the University of Rochester to assess how the neuromuscular patient community was responding to the social distancing policies imposed by the COVID-19 pandemic. We are so grateful to the hundreds of you who responded. The key investigators, Leann Lewis and Katy Eichinger, will present their findings…
Find out more »Dec
2
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. Call Tim with your questions…
Find out more »
SUSIE KANEWSKE
Chapter Director
Hello! I am excited to lead the inaugural Pacific Northwest Chapter. Full bio coming soon!
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!
