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.
Fall 2023
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!
View the complete PNW Fall 2023 News and Notes flyer here!
Summer 2023
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.
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
Wellness Hour – Chair dance party
Zoom Virtual Meeting , United StatesDancing with differences: A Moving Celebration of the Season 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a joyous and... Read More »
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, December 12th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD... Read More »
Feeling Fit with FSHD – Shaking Qigong with Trish Kean
Zoom Virtual Meeting , United States18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us this month for a session... Read More »
Selina Lai
Chapter Director
For over 10 years Selina has been active in the FSHD community as a fundraiser and supporter both in the Los Angeles area and more recently, the Pacific Northwest. With numerous years of experience as a community leader, she hopes to grow the reach of the PNW Chapter to all those affected by FSHD in the area. Several members of her family have been diagnosed with FSHD and she believes that continued advocacy, education and research will soon lead to a cure or treatment.
Selina had careers in Nutrition and Dietetics and Education before recently retiring to Washington State. She spent 15 years serving in leadership positions in Rancho Palos Verdes, CA while raising her two boys, Thomas and Andrew. She lives with her husband, Russell, in beautiful Gig Harbor, WA. She is an avid tennis player and loves cooking, reading, and travel. She looks forward to working with community members to meet their expectations for the PNW Chapter.
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of the local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
