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St. Louis World FSHD Day Celebration 5:30-7:30pm at Hawk Ridge Park (Zachary's Playground) - 8392 Orf Road, Lake Saint Louis, MO 63367 You're invited to our upcoming picnic in celebration of World FSHD Day! We'll also host this event as an official kick-off to our 2025 Walk & Roll season. The picnic will be BBQ-style. […]
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]
FSHD University - Update from Avidity Biosciences Tuesday, June 24th 1:00 pm ET Join us for a special FSHD University webinar presented by Avidity Biosciences, a biotechnology company advancing RNA-based therapies for rare muscle diseases. In this session, the Dr. Nicholas Johnson will share an overview of their approach to targeting the root cause of […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Frank Hanley will lead a session of Qi Gong meditation, stretching, and breathwork. For people living with FSHD who are interested in exercise and fitness, we meet on […]
Breathing with FSHD Thursday, June 26 5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT Note: This webinar is not at our usual time due to Dr. Benditt’s clinic schedule. Joshua Benditt, MD, University of Washington, is a professor of pulmonary, critical care and sleep medicine at the UW School of Medicine. As […]
Los Angeles Chapter Virtual Meeting Friday, June 27, 2025, 7:00pm-8:00pm PT, Virtual via Zoom - RSVP for the link Please join us for our annual Los Angeles chapter meeting to connect, provide feedback, and support. All are welcome. RSVP for the Meeting
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]
The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. The race will take place on July 12, 2025. George is the founder of Team FSHD Cycling. Since 2017, the team participates in endurance bicycle events to raise awareness and funds for […]
Dakotas Chapter In-Person Meeting Sunday, July 13 from 2:00-3:00pm Location: 3788 55th Ave S, Fargo, ND 58104 Please join us for a FSHD Society Dakotas Chapter social gathering. Event RSVP
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]
NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community […]
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re […]
Sunday, August 18, 2024 2025 Falmouth Road Race The 2025 ASICS Falmouth Road Race promises to be an exciting event celebrating 53 years of running the iconic course along the sea, giving back to the community and promoting running, health and fitness! The race happens at 9:00am on Sunday, August 17. This is our third […]
Register for the Pacific Northwest Sips & Smores and support our annual FSHD fundraising campaign. Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join your online fundraising efforts. Then we will celebrate the Pacific Northwest together with sips and s'mores!
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
FSHD University: MRI Biomarkers in FSHD Presenter: Seth Friedman, PhD Join us for an FSHD University webinar exploring the role of MRI in facioscapulohumeral muscular dystrophy (FSHD) clinical trials. Dr. Seth Friedman will discuss how advanced imaging helps track disease progression, select trial participants, and evaluate therapeutic impact. This will provide an opportunity to learn […]
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
Twin Cities Marathon or 10 Mile Join us for The Most Beautiful Urban Marathon in America®️, winding through downtown districts and crossing the Mississippi River. The FSHD Society will participate in this event to raise funds for - and awareness about - FSHD treatments and a cure. Twin Cities Marathon website. For more information on […]
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
