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
What's Happening in The Year of the Dragon
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, TBD in June around 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 - exact date TBD
-
Mark Your Calendars: 2024 New Year Meeting
We are looking forward to having our first meeting of the year in Portland, Oregon on Feb. 10th, the first day of the Chinese Lunar New Year. We will have a QiGong session to add positive energy for the Year of the Earth Dragon. We will follow the exercise with refreshments of Chinese dim sum and tea.
Full event details found here >>
Winter 2023
We had a busy fall season hosting both our fundraising celebration, “Sips, Smores, & Songs for Smiles”, and the PNW FSHD 360 Research Day at the Boeing Museum of Flight. We were pleased to have several new people join in at both events. Now, as many of us are focused on holiday celebrations with family. I want to thank each of you for being a part of our PNW FSHD family.
Read the full newsletter here.
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 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!
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NYC/NJ-area Virtual Chapter Meeting – April 6, 2024
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