Oct 6, 2026 - 7pm ET | 6pm CT | 5pm MT | 4pm PT Anchoring in Purpose: Finding Meaning in Every Season of Life Navigating life with FSHD often requires a profound shift in how we define purpose and productivity. In this session, we will look beyond physical abilities to discover how true meaning […]
Oct 7, 2026 4:30pm ET | 3:30 CT | 2:30 MT | 1:30 PT Here to Help: Ways to Flourish (in good times and in bad) Join us at 4:30pm EST -- 30 minutes before the main session -- for some informal conversation. Please note that per the request of the attendees in this group, […]
Thursday, October 8 at 1:00 pm ET Presenter: Dr. Davi Mázala, PhD Join Dr. Davi Mázala, PhD, for an insightful webinar on exercise habits in FSHD. Dr. Mázala will explore what makes exercise sustainable, share practical strategies for building and maintaining healthy exercise habits, and discuss what we're learning from real-world patient experiences. Discover how […]
Oct 8, 2026 7:00pm ET | 6pm CT | 5pm MT | 4pm PT Topic: Chair Yoga This class, taught by Donna Russo, BA in Dance from Mercyhurst University and certified in Chair Yoga, concentrates on breathing techniques and meditation to help relieve stress. Donna is familiar with adapting Yoga. Yoga is for everyone: it […]
Rescheduled to Oct. 10 due to weather! 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, […]
2026 North Texas 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 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 […]
Oct 12, 2026 4:30 PM ET | 3:30 CT | 2:30 MT | 1:30 PT Experiencing Loss and Grief Living with a progressive condition like FSHD often causes grief over the loss of function and the challenges this represents. Join us in this safe space to explore different ways of acknowledging and working with these […]
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 […]
October 14, 2026 | 6pm ET/5pm CT The Understanding and Practice of Emotional Well-Being We will consider the meaning of well-being, how we define it personally, and ways we can enhance it in our daily lives. Grounded in shared human experience, we recognize that emotional well-being impacts everyone – regardless of their connection to FSHD. […]
October 15, 2026 | 6pm MT/5pm PT The Understanding and Practice of Emotional Well-Being We will consider the meaning of well-being, how we define it personally, and ways we can enhance it in our daily lives. Grounded in shared human experience, we recognize that emotional well-being impacts everyone – regardless of their connection to FSHD. […]
Oct 19, 2026 7:00 PM ET/6pm CT/5pm MT/4pm PT This class, taught by Donna Russo, BA in Dance from Mercyhurst University and certified in Chair Yoga, concentrates on breathing techniques and meditation to help relieve stress. Donna is familiar with adapting Yoga. Yoga is for everyone: it reduces stress, increases flexibility, relaxes your breathing, creates […]
Oct 19, 2026 8pm ET | 7pm CT | 6pm MT | 5pm PT “What are you Into? Hobbies and Interests Hangout” Come join the Young Adults group for some social time with peers! We’ll have a casual discussion on our hobbies and interests. We’d love to have you join us or just listen in […]
October 20, 2026 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Guest: Jessica Duis - Vice President Clinical Development, Epicrispr Biotechnologies Register Now
Thursday, October 22 at 1:00 pm ET Presenter: Don Burke, Russell Lai, Jeff Johnston Autonomous driving technology is no longer a vision of the future—it's here, and it's rapidly changing how people think about mobility and independence. But what can this technology actually do, and what does this technology mean for individuals living with FSHD? […]
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 […]
2:00-3:00pm CT Bethany Retirement Living - 4255 30th Ave S, Fargo, ND 58104 Join the Dakotas Chapter for our next in-person meeting! We'll have an opportunity to connect with each other and give a recap of our recent Walk & Roll. 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 […]
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 […]
Oct 27, 2026 8:00 PM ET | 7pm CT | 6pm MT | 5pm PT This meeting is for those 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 caregivers. This month's meeting will be led by Kim […]
Oct 31, 2026 1:00 PM ET | 12pm CT | 11am MT | 10am PT 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 […]
4:30pm - 6:30pm MT Living The Dream Brewing 9150 Commerce Center Cir #300, Highlands Ranch, CO 80129 Join us for an evening at the Living the Dream brewery to enjoy some fresh beer and discuss FSHD news. Our own Jeff Johnston will be sharing his thoughts on his new therapy pool and there will be […]
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 […]
8:30 - 10:30am MT Vellichor Coffee Roasters 720 Golden Ridge Rd Ste D, Golden, CO 80401 Join us for an in-person chapter gathering - this time over coffee. There will be no formal presentation, but we will be discussing clinical trials and what advancements are being made as well as potential strategies to get enrolled […]
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 […]
Thursday, November 19 at 1:00 pm ET Presenter: Enza Leone, PhD, University College London Hospitals NHS Foundation Trust Living well with FSHD involves much more than medication—it’s about adopting practical strategies that help maintain function, independence, and quality of life. In this webinar, Dr. Enza Leone, research physiotherapist at the Queen Square Centre for Neuromuscular […]
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 […]
Thursday, December 10 at 1:00 pm ET Presenter: Dr. Lauren Elman, MD, University of Pennsylvania The FSHD treatment landscape continues to evolve, with new therapies, clinical trials, and research approaches bringing us closer to a future with meaningful treatment options. Join Dr. Lauren Elman of the University of Pennsylvania for our annual drug development update […]
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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