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.
PNW Chapter Happenings
News & Notes
Pacific Northwest Day at the Ball Park
Sunday, June 9, 2024, 1:00 pm - 4:00 pm PT
WHERE: Cheney Stadium, 2502 S Tyler St, Tacoma, WA 98405
Details: Greetings my PNW FSHD Chapter friends! 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 9th at Cheney Stadium in Tacoma to watch the Tacoma Rainiers Baseball team play the Reno Aces at 1:35pm.
Together we will have an early celebration of WORLD FSHD DAY and Father’s Day at the ballpark. 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 and World FSHD Day t-shirts if you have one!
Spring is in the air in our beautiful PNW!
CONTACT: Selina Lai, PNWChapter@fshdsociety.org, 310-621-0564
Click HERE for a PDF version of the below update.
FSHD Society initiatives:
- Project Mercury - Solving the biggest threats to keeping patients from accessing affordable and effective treatments.
- FSHD Navigator - The FSHD Navigator is a service dedicated to helping families with FSHD find what they need to live their best lives. Through this program, you can get connected to the information, resources, or contacts you’re looking for. This is going to be a very conversational, relationship-focused program. “Journeying together.”
- Hill Day, Washington DC advocacy day in mid-May
- 31st Annual International Research Congress: June 13-14, Denver, Colorado
- 2024 FSHD CONNECT Conference - June 15-16 in Denver, Colorado
In the Pacific Northwest:
- Tacoma Rainiers Baseball Game, 1:00-4:00pm at Cheney Stadium on Sunday, June 9: Early celebrations of Fathers' Day and World FSHD Day
- FDA Listening Session on Upper Body Mobility
- BetterLife FSHD – Platform for patients to connect them to clinical trials and research, symptom tracking, securely contribute your data to accelerate research and a cure. Public launch in fall 2024.
- Fall FSHD Walk and Roll Fundraising Celebration - Saturday, Spetember 14, 2024 at 9:00am PT at Owens Beach Pavilion
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Spring 2023
Click here to read all about the latest PNW Chapter News and Notes for Spring 2023!
Winter 22/23
Click here to read all about the PNW Chapter News and Notes for Winter 22-23!
October/November 2022
Click here to read all about the PNW Chapter News and Notes for October and November 22!
July/August 2022
Click here to read all about the PNW Chapter News and Notes for July and August 22!
June 2022
Click here to read all about the PNW Chapter News and Notes for June 22!
May 2022
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!
Click HERE for all of the PNW Chapter Notes and News April 22!
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!
Pacific Northwest Chapter in Pictures
To contact us directly, please email: PNWChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK!
Upcoming Events
Pacific Northwest Day at the Ball Park!
Cheney Stadium, 2502 S Tyler St, Tacoma, WA 98405 Cheney Stadium 2502 S. Tyler St, Tacoma, WA, United States4:00-7:00pm ET | 3:00-6:00pm CT | 2:00-5:00pm MT | 1:00-4:00pm PT Pacific Northwest Day at the Ball Park Sunday, June 9, 2024, 1:00 pm - 4:00 pm PT WHERE: Cheney... Read More »