This is a joint meeting between the Western PA Chapter and the Columbus Chapter. We will be welcoming Ashley Ferreira, the FSHD Society's Director of Education, to talk about Preparing for Future FSHD Treatments - Passport to Readiness. It's a great opportunity to learn more about what we need to do to be prepared and […]
Time: 11:00am - 1:00pm Location: Big Grove Brewery 1225 S Gilbert St., Iowa City 52240 We’re excited to host the very first official meeting of the Iowa FSHD Chapter! This gathering will be a relaxed meet and greet, with a few light agenda items to help us set the initial direction of our chapter. This […]
Join us for a special two-hour Wellness Hour celebrating the creativity, talent, and spirit of the FSHD community. This virtual art show will showcase the many ways our members express themselves—from painting, photography, writing, and music to crafts, textiles, and more. Come be inspired as we highlight the unique voices and creative outlets that uplift […]
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 your favorite podcast app. Subscribe […]
We will catchup and discuss learnings from my attendance at the recent Volunteer Leadership Summit conference, including clinical trial updates, being ready for treatments upon FDA approval, etc. <p data-pm-slice="1 1 Register Now
Join us for our first March session of Feeling Fit with FSHD as we focus on gentle and effective neck and shoulder exercises. These areas are often impacted by FSHD, affecting posture, comfort, and daily activities. This session will guide you through safe movements designed to improve mobility, reduce tension, and support better alignment—helping you […]
Join the PNW Chapter for our March Meetup on March 14th at 3pm PT! Topics include: Attending the FSHD Connect Conference - what to expect A new nutrition recommendation for FSHD Local upcoming meetings and events Answering your questions Register Now
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. Due to unforseen circumstances, the February meeting has been moved to March 16. Understanding Insurance for People with […]
Thursday, March 19 at 1:00 pm ET Presenter: Marisa Spain, Disability Rights Advocate, Disability Rights Michigan Join disability rights advocate Marisa Spain as she provides our community with a clear and practical overview of Title I of the Americans with Disabilities Act (ADA) and its implications for workers with disabilities. This session will explore key […]
Join the Chicago chapter for a virtual meeting! <p data-pm-slice="1 1 Register Now
Join us for a Bay Area Chapter Meeting! Please RSVP for the meeting location or zoom link details. RSVP Here
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 your favorite podcast app. Subscribe […]
You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or […]
Breathing is foundational to strength, relaxation, and overall wellness. In this Feeling Fit with FSHD session, we’ll concentrate on breathing techniques that support posture, endurance, and stress reduction. Participants will learn practical strategies to enhance breath control and incorporate mindful breathing into everyday routines for improved physical and emotional well-being. <p data-pm-slice="1 1 Register Now
Join us for our next Weekend Wellness Hour, an open forum gathering designed for members of the international FSHD community who are available on the last Saturday of most months. This welcoming space brings together individuals at every stage of the FSHD journey, from newly diagnosed to long-experienced community members, for meaningful conversation, shared questions, […]
Metaphors of Living with FSHD: Like fish who are unaware that they live in water, we don’t recognize how much we think in terms of metaphors: “I’m in over my head”; “Business is War”; “Life is Art”; “Illness is an arduous journey”. Metaphors make a comparison between two seemingly unrelated things in a way that […]
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 your favorite podcast app. Subscribe […]
Thursday, April 16 at 1:00 pm ET Presenter: Mollie Garrett, Garrett Travel Adventures, LLC Mollie Garrett, a travel expert who specializes in accessible travel for individuals with disabilities and who brings her own lived experience as a traveler with FSHD, will share her personal journey navigating the world with FSHD, along with practical tips that […]
Young Adults Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD Young Adults is a social and support group focused on encouraging and empowering young […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT New Schedule: The Parents' Roundtable will meet quarterly starting in 2026. We will meet in January, April, July, and October of 2026. Join us for our Parents’ Roundtable on the 3rd Tuesday, where parents meet to exchange ideas, […]
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 your favorite podcast app. Subscribe […]
You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or […]
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 your favorite podcast app. Subscribe […]
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 your favorite podcast app. Subscribe […]
You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or […]
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 your favorite podcast app. Subscribe […]
Young Adults Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD Young Adults is a social and support group focused on encouraging and empowering young […]
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 your favorite podcast app. Subscribe […]
Join us for the 2026 International Research Congress on FSHD June 25-26 in Chicago Register Now Submit Your Abstract Join us in Rosemont, Illinois (Greater Chicago area) for our annual global gathering dedicated to advancing research in Facioscapulohumeral Muscular Dystrophy (FSHD). The 2026 IRC convenes leading scientists, clinicians, industry partners, and emerging investigators to collaborate […]
The Future in Motion: Empowerment, Connection, and Care for Life with FSHD Uniting patients, families, and experts to equip, connect and prepare for what lies ahead. June 26–28, 2026 Hyatt Regency O’Hare Chicago Register Now Join us in Rosemont, IL (the Greater Chicago area) for the 2026 FSHD Connect Conference—our biennial global gathering dedicated to […]
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 your favorite podcast app. Subscribe […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT New Schedule: The Parents' Roundtable will meet quarterly starting in 2026. We will meet in January, April, July, and October of 2026. Join us for our Parents’ Roundtable on the 3rd Tuesday, where parents meet to exchange ideas, […]
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 your favorite podcast app. Subscribe […]
5th Annual Family Picnic August 1, 2026 | 12:00-3:00pm ET Adams Township Community Park, Township Pavilion 698 Valencia Rd., Mars, PA 16046 Please join us once again for this fun, in-person event where we can be in community and enjoy time together. Please RSVP so that we know how many people to expect! RSVP Here
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 your favorite podcast app. Subscribe […]
Young Adults Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD Young Adults is a social and support group focused on encouraging and empowering young […]
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 your favorite podcast app. Subscribe […]
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 your favorite podcast app. Subscribe […]
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 your favorite podcast app. Subscribe […]
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 your favorite podcast app. Subscribe […]
Young Adults Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD Young Adults is a social and support group focused on encouraging and empowering young […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT New Schedule: The Parents' Roundtable will meet quarterly starting in 2026. We will meet in January, April, July, and October of 2026. Join us for our Parents’ Roundtable on the 3rd Tuesday, where parents meet to exchange ideas, […]
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 your favorite podcast app. Subscribe […]
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 your favorite podcast app. Subscribe […]
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 your favorite podcast app. Subscribe […]
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 your favorite podcast app. Subscribe […]
Young Adults Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD Young Adults is a social and support group focused on encouraging and empowering young […]
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 your favorite podcast app. Subscribe […]
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