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.
The 2023 Walk & Roll to Cure FSHD
Our 2023 annual Pacific Northwest Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated and helped raise awareness and funds towards reaching our goal of a cure by 2025. Fundraising will continue through the end of the year.
Learn more about the 2023 Walk & Roll to Cure FSHD HERE!
Stay tuned as we begin planning for our 2024 Walk & Roll to Cure FSHD. If you would like to volunteer to support the 2024 Walk & Roll, please contact your local chapter director or walk leader.
PNW Chapter Happenings
News & Notes
PNW FSHD 360
Thank you to everyone who joined us for the FSHD 360 on October 14th at the Boeing Museum of Flight! A summary of notes for the event can be found here.
What a summer it has been! We had a fabulous event at Cheney Stadium in Tacoma bringing our community together to celebrate World FSHD Day. Our group had front row seats along the first base line with room for friends and family. Our booth before the game introduced many people to FSHD and was the first community education project we’ve done in Tacoma. Thank you to those new folks that joined us. It was wonderful meeting all the FSHD family members!
Celebrate World FSHD Day with a day at the Ball Park!
Summer is just around the corner and that means time for BASEBALL. Is there a better way to celebrate and gather our community than going to a baseball game? Join us on Saturday, June 17th at Cheney Stadium in Tacoma
at 6:00pm to watch the Tacoma Rainiers vs. Albuquerque Isotopes.
Together we will celebrate WORLD FSHD DAY and Father’s Day at the ball park. Your free tickets include admission to the game and a meal. We have secured wheelchair accessible seating as well as seats with minimal stairs for our group.
We invite you to wear your World FSHD Day gear – orange hats or glasses, World FSHD Day t-shirts – if you have one! We will have an educational booth at the game as well.
The deadline for signing up is June 10, 2023.
Please contact Selina Lai at PNWChapter@fshdsociety.org if you have any questions about the event.
Click here to read all about the latest PNW Chapter News and Notes for Spring 2023!
Click here to read all about the PNW Chapter News and Notes for Winter 22-23!
Click here to read all about the PNW Chapter News and Notes for October and November 22!
Click here to read all about the PNW Chapter News and Notes for July and August 22!
Click here to read all about the PNW Chapter News and Notes for June 22!
For our May meeting, we were joined by Jonelle Young, B.H.K., CPT, CNP for her talk: "Fitness & Nutrition from a Holistic Health Perspective with specific recommendations for FSHD population." Watch the recording by clicking here. Check out Jonelle Young's slides by clicking here!
June brings the 2022 FSHD Connect Conference in Orlando, June 18 & 19. For those of you not attending in person, we will be hosting a Watch Party--stay tuned for details via email!
Thank you to all our virtual and in-person attendees for joining our PNW meeting on "Personal Wellness, Tips from the Locals."
We were fortunate to have Ranae Beeker, Karla Nuss, and Nancy Payton share their personal paths to wellness.
It was also our pleasure to have both Heidi Roy (in-person) and Marc Stone (virtually) of the FSHD Society attend our meeting and provide the latest news on the Fulcrum Phase 3 clinical trial announcement.
Click here to see the meeting handouts and from our March 5, 2022, Chapter meeting!