Sunday, June 14th, 2026 Join the Pacific Northwest Chapter on June 14th to watch the Tacoma Rainiers play against the Albuquerque Isotopes! Cheney Stadium, Tacoma - 2502 S Tyler St, Tacoma, WA 98405 12:00pm if you'd like to join us for a pre-game photo on the field. The game starts at 1:35pm and ends around […]
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 […]
June 17, 2026 | 7:00-8:00pm CT Agenda: Introductions - How’s Life Research updates-recap “Understanding Gene Therapy and AAV technology for FSHD”. Video can be found on Iowa Chapter Facebook page April 29th, 2026 post. FSHD News World FSHD Day FSHD Connect Conference FSHD Iowa Chapter Register Now
Jun 17, 2026 at 7:00PM ET We are excited to gather virtually for our upcoming Michigan Chapter meeting and hope you can join us! During this meeting, we'll discuss what's happening across Michigan, share chapter updates, and connect with one another. We'll also talk about the upcoming FSHD Society Connect Conference taking place in late […]
Thursday, June 18th at 1:00 pm ET Presenter: Loralei L. Thornburg, MD, University of Rochester Medical Center This session explores key women’s health topics in FSHD, including family planning and reproductive considerations, while highlighting guidance from the updated FSHD clinical care guidelines. Participants will gain insight into how care recommendations can support health, planning, and […]
June 18, 2026 | 6:00pm National Westhills (180 Stewart Green SW, Calgary) Chapter get-together to celebrate World FSHD Day (two days early). An opportunity to mix & mingle over dinner. Everyone is welcome! Register Now
Register Now
June 20, 2026 from 11:00am-1:00pm Great Lawn Park Picnic Site 2. For GPS directions, please use the address 8859 E Lowry Blvd. Denver, CO 80230 Join us for a picnic to celebrate World FSHD Day on June 20th! June 20 is World FSHD Day and we will be gathering as a Chapter to celebrate. We […]
CANCELLED 6:00pm at L.P. Frans Stadium - 2500 Clement Blvd NW Hickory NC 28601 You are invited to join the North & South Carolina FSHD Chapters for an in-person gathering on World FSHD Day, June 20th, 2026, for a night of baseball as the Hickory Crawdads take on the Columbia Fireflies! The night will be […]
June 20, 2026 at 7:30pm Modern Brewery (5200 Oakland Ave, St. Louis, MO 63110) + STL Science Center Planetarium (5100 Clayton Ave, St. Louis, MO 63110) DETAILS: We will first meet at Modern Brewery for dinner/drinks, and to celebrate together. After that we will head to the nearby planetarium, which will be lit up orange in […]
June 20 from 7:30-10:30pm PT Mahony's Pub. Vancouver Convention Centre West Building, Burrard Landing, 1055 Canada Pl #36, Vancouver, BC V6C 0C3 Come out for some food and beverages to help celebrate World FSHD Day right next to the Sails, which will be lit up in ORANGE to commemorate World FSHD Day. Lots of other […]
8:00pm ET at El Azteca Perimeter - 6115 Peachtree Dunwoody Road, Ste. 100, Sandy Springs GA 30328 Please join us once again to watch the King & Queen Buildings light up orange in honor of World FSHD Day! We are planning to meet up at El Azteca Perimeter, located at 6115 Peachtree Dunwoody Road, Ste. 100, […]
Jun 23, 2026 at 6pm 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. Whether you’re looking to share […]
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 […]
**Schedule adjusted for World FSHD Day** 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 […]
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 […]
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
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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 […]
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