Now available. Read our 2025 Impact Report
July 13th, 2026 4:30pm ET Support Systems This session will explore the various Support Systems that might be available to you. Come to the Wellness Hour to hear how you can be more supported in your FSHD Journey. You may find new ideas for possible support that you might not have thought about before! Led […]
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, July 16th at 1:00 pm ET Presenter: Marisa Spain, Disability Rights Michigan Obtaining, maintaining, and advancing in employment can be a complex conversation when also living with FSHD. You might need expensive equipment like a wheelchair or accessible vehicle to be able to maintain access to work, or additional training or schooling to transition […]
3:00pm CT Bryan's office building: 3788 55th Ave S, Fargo, ND 58104 Happy Summer! Let's get together to catchup, and we will be discussing the Walk & Roll event. Register Now
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, […]
July 25, 2026 1:00 PM ET 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 […]
12:00-2:00pm PT - Hybrid Twohey's - 424 Fair Oaks Ave, South Pasadena, CA, 91030 OR Virtual via Zoom Please join us in-person or via zoom for another great time in sharing stories, support, and we are looking for volunteers to help us find sponsors and organize our Walk'N'Roll! Hope to see you there! Register Now
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 […]
Virtual via Zoom on July 28 6:00-7:00pm ET 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. At this meeting, […]
Wednesday, July 29th at 5:00 pm ET Presenter: Emma Weatherley, Project Mercury Chair Join Project Mercury Chair Emma Weatherly as we reflect on three remarkable years of global collaboration and look ahead to an even more critical phase. Project Mercury began with a simple but urgent realization: promising FSHD therapies were advancing faster than the world's […]
Multi-Chapter Meeting: Eastern & Central Zones July 29, 2026 06:00 PM ET / 5:00 PM CT Join us to learn about updates from the 2026 International Research Conference! After the presentation, there will be time to join your chapter in a breakout room. Register Now
Multi-Chapter Meeting: Mountain & Pacific Time Zones July 30, 2026 6:00 PM MT / 5:00 PM PT Join us to learn about updates from the 2026 International Research Conference! After the presentation, there will be time to join your chapter in a breakout room. Register Now
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
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us to speak with a physical therapist whose patient has benefited from a PT program. Register NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD […]
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 […]
Sept 9, 2026 7:00 PM ET This will be a great opportunity to connect with others, hear about what's happening across Michigan, share updates, and discuss ways we can continue to support individuals and families affected by FSHD. We'll also be focusing on the Michigan Walk & Roll, taking place on September 20th. Whether you're […]
2026 Alberta Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
2026 Chicagoland Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
2026 Colorado Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
Pacific Northwest Sips & Smores for Smiles 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! Register for Sips & […]
2026 Intermoutain (Utah) Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]
2026 Ontario Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
2026 International Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
2026 Mid-Atlantic Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
2026 San Diego Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]
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 […]
2026 Bay Area Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]
2026 Long Island Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]
2026 St. Louis Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]
2026 New England Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]
2026 New Jersey Shore Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on […]
2026 Sacramento Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
2026 North Carolina Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]
2026 NE Florida Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]
2026 Los Angeles Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]
2026 Virginia Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us to speak with a physical therapist whose patient has benefited from a PT program. Register NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD […]
2026 Atlanta Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
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, […]
2026 Columbus Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
2026 Drum & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media and […]
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 […]
2:00-4:30pm ET, Location TBD Before the busy holiday season arrives, we'd love to spend some time together connecting, learning, and engaging with fellow members of the Michigan FSHD community. We're planning an in-person Michigan Chapter meeting at a centrally located venue (to be announced soon) and hope you'll join us for refreshments, light appetizers, and […]
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 […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us to speak with a physical therapist whose patient has benefited from a PT program. Register NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD […]
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 […]
Join us in Madrid, Spain for the 2027 International Research Congress on FSHD. More details to come, stay tuned! IRC Webpage
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