Now available. Read our 2025 Impact Report
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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 […] |
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**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 […] |
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July 1, 2026 5:00pm ET/ 4:00 CT / 3:00 MT / 2:00 PT This month, we will discuss "Tips and Tricks for Resourceful Living". Bring a challenge that we can brainstorm together. We'll share ways we can make our lives easier as we navigate life with FSHD. Example topics include: Bedding Bathing Toileting Cooking Eating […] |
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July 7th, 2026 - 7pm ET Dealing with Hard Times: Sharing and Holding on to Faith Living with FSHD often brings physical challenges, emotional fatigue, uncertainty about the future, and moments of grief. Scripture shows us that God does not expect us to pretend we are fine. He invites us to bring our whole selves—our […] |
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July 9, 2026 7:00 PM ET Join us this month for a Chair Yoga session led by Donna Russo. This is a gentle chair yoga practice with meditation and breath, emphasizing how to adapt to your movement. As a reminder: Participants must register for this meeting in order to receive the Zoom link. After registration, […] 
July 9th, 2026 at 7:00pm ET We will be discussing news from the FSHD Connect Conference, planning our Chapter Family Picnic, and enjoying sharing and spending time together. Register Now |
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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 […] |
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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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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 […] |
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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 |
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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, […] |
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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 […] |
1 event,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 |
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2 events,
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, […] |
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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 |
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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 |
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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 |
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