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 Chapter Winter Education Meeting
Strength Training for Rehabilitation and Maintenance in FSHD.
November 2, 2024, Noon to 2pm
Our guest speaker, Alex Walker of Walker Weightlifting, share his recent experiences working with members of the FSHD community. Together with a few of his FSHD clients Alex:
- Shared insights into the benefits of strength training for rehabilitation and maintenance in FSHD
- Discussed safe use of home-based strength equipment and exercises
- Discussed how to get involved in online coaching with Alex
Click HERE for the full recording.
Fall 2024 Updates
Click HERE for a PDF of the Fall 2024 PNW Chapter Newsletter. Highlights from the newletter are included below.
- Leaves are turning golden on the trees, rain has started to fall again, and we are hopeful for “sun breaks” during our days. Let’s start with a bit of gratitude for those who helped make our PNW Walk and Roll Fall Fundraising Celebration a success with donations topping $30,000.
- Our next education meeting is on November 2nd, noon to 2pm on the topic of Strength Training for Rehabilitation and Maintenance in FSHD. Personal Trainer Alex Walker of Walker Weightlifting will discuss the benefits of strength training for FSHD along with a few of his FSHD clients. RSVP HERE.
- SAVE THE DATE for our next winter meeting! Once again we will be gathering in Portland, OR for Shaking QiGong with Trish Kean the weekend of January 25-26, 2025. Our exercise session will be followed with a Chinese New Year brunch, Year of the Snake!
Summer Updates!
CONTACT: Selina Lai, PNWChapter@fshdsociety.org, 310-621-0564
Click HERE for a PDF version of the below update.
- We had 40 local FSHDers celebrate World FSHD Day with the Tacoma Rainiers on June 8th. It was great to welcome Darcy & Family and Ashley & Family to our PNW community.
- Then on June 14-16, a few of us attended the Patient Connect Conference in Denver and many more locals attended the event virtually. It was a fantastic experience to meet researchers and learn firsthand about the many programs the FSHD Society is working on to prepare for the FDA drug approval process.
- Many attendees participated in a research project while at the conference and we
were all inspired to build our “rope team” by the unstoppable Sargent Major Gretchen Evans. - Event registrants can now access videos of the event
sessions here.
2024 PNW Walk & Roll to Cure FSHD
Our 2024 annual Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated in helping raise awareness and funds toward reaching our goal of finding treatments and a cure for FSH Muscular Dystrophy. Fundraising will continue through the end of the year.
Learn more about the Walk & Roll to Cure FSHD here.
Stay tuned as we begin planning for our 2025 Walk & Roll to Cure FSHD!
Enjoy these beautiful summer days and we look forward to seeing you in
September!
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 2024
Read the Spring2024 newsletter here.
Winter 2024
Read the Winter 2024 newsletter here.
Winter 2023
Read the Winter 2023 newsletter here.
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
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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
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