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Western PA Chapter Picnic 12:00pm ET, Adams Township Community Park, Township Pavilion, 698 Valencia Rd., Mars, PA 16046 RSVP: Chapter Meeting RSVP
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]
San Diego Chapter In-Person Meeting with Avidity August 9th, 2025 | 10:15am PT Carmel Mountain Ranch Library, 12095 World Trade Dr., San Diego, CA 92128 Speakers from Avidity Biosciences are joining the San Diego Chapter to discuss the most up to date information on Del-Brax. Please RSVP and join us at the Carmel Mountain Ranch […]
New England Chapter In-Person Meeting: August 10, 2025 12:00pm at Harry C Barnes Memorial Nature Center - 175 Shrub Road Bristol CT 06010 Come join the FSHD New England community for a casual luncheon at the Barnes Nature Center. Lunch will be provided and RSVP required. There is a beautiful mile-long wheelchair accessible trail through […]
Sunday, August 10, 2025 at 1:00pm PT Stanford University, Hoover 208, 213 Quarry Rd, Palo Alto, CA or Virtual via Zoom (RSVP for the link) Please join us for the SF Bay Area Chapter meeting on Sunday, August 10, at 1pm, at Stanford in the Hoover bldg, Room 208. We are excited to have our […]
North Carolina Chapter Baseball Game Saturday, August 23, 6:00pm, Hickory Crawdads Stadium 2500 Clement Blvd NW, Hickory, NC 28601 Join us for a night at the ballpark! There are 30 spots reserved. We cannot exceed 30. So, the sooner everyone reserves your ticket, the better! Just a FYI there is a $5 parking fee and […]
Monday, August 25 5:00pm PT / 6:00pm MT / 7:00pm CT / 8:00pm ET We’re excited to invite you to our next Multi-Chapter Meeting, a virtual event that brings together several FSHD chapters for updates and peer connection. This is part of a new national meeting series designed to strengthen our chapter network and keep […]
Tuesday, August 26 7:00pm ET / 6:00pm CT / 5:00pm MT / 4:00pm PT We’re excited to invite you to our next Multi-Chapter Meeting, a virtual event that brings together several FSHD chapters for updates and peer connection. This is part of a new national meeting series designed to strengthen our chapter network and keep […]
Réunion du lancement du chapitre du Québec/Launch meeting of the Montreal (Quebec) Chapter 7:00pm ET, sur Zoom/via Zoom Ordre du jour Présentation brève de l’histoire de la FSHD Society et de ses chapitres canadiens Présentation de la mission de la FSHD Society et du rôle des chapitres Informer la communauté sur les principales activités à […]
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
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!
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
7:00pm ET, via Zoom Join the North Carolina Chapter for our monthly "Third Thursday" meeting. RSVP: Chapter Meeting RSVP
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
2025 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 […]
2025 Minnesota 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 […]
Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Please RSVP […]
7:00pm PT, via Zoom Local Chapter Meeting to discuss everything LA and FSH, share ideas, personal stories and connect! RSVP Here
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser. It is also the ONLY signature event in North America dedicated to raising funds for FSHD research, cures, and community support.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
Check in, get the latest from the FSHD Society, and the group will share in areas of interest. RSVP Here
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
North Carolina & South Carolina friends, please join us for our monthly "Third Thursday" call! RSVP: Chapter Meeting RSVP
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!
Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! ~Glen Denehie, North Texas Chapter Director RSVP Here
Chers amis de la communauté FSHD du Québec, Nous avons le plaisir de vous inviter à une rencontre conviviale du Chapitre du Québec, qui aura lieu le 30 octobre prochain à 18h00 au restaurant Zibo! de Brossard. Ce sera une occasion précieuse de mieux faire connaissance et de discuter ensemble des activités à venir et de […]
Saturday, November 1, 2025 Join us at our upcoming FSHD 360 regional conference where you'll hear directly from experts and medical professionals about the latest in research, treatments, and care. You'll also connect with other patients, families, and caregivers, making this a powerful space for everyone to learn and grow together. This event covers more […]
Saturday, November 8, 2025 Join us at our upcoming FSHD 360 regional conference where you'll hear directly from experts and medical professionals about the latest in research, treatments, and care. You'll also be able to connect with other patients, families, and caregivers, making this a powerful space for everyone to learn and grow together. This […]
Mix it Up Social Hour - We will mix a special seasonal cocktail together, toast the season, and spend some social time together. <p data-pm-slice="1 1 RSVP Here
Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and […]
We're hosting an informal brunch for people with FSHD and their families. This is a space to ask questions and share resources with each other. We also have some exciting chapter updates. We now have an Ontario Chapter Instagram account - find it at @fshdsociety.ontario on Instagram. Additionally, our 5th annual Walk & Roll to […]
North & South Carolina Chapters, please join us for our monthly "Third Thursday" call! <p data-pm-slice="1 1 RSVP Here
We will provide a Walk & Roll update. Update on FSHD Society activities, clinical trials, date for in person meeting in February and open discussion forum. RSVP Here
Let's check in, recap the Drum & Roll, get the latest in FSHD news, and discuss holiday hacks and hopes. <p data-pm-slice="1 1 Register Hhere
Let's check in, get the latest in FSHD news, and discuss holiday hacks and hopes. RSVP Here
We are getting the Nevada Chapter back together to meet new people and reconnect. <p data-pm-slice="1 1 RSVP Here
Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and […]
Rescheduled to Dec. 13 due to inclement weather. 12:00pm PT at Santa Monica Brew Works - 1920 Colorado Ave., Santa Monica, CA, 90404 Join us for pizza and drinks, and meet fellow walkers, rollers, families, and friends! We are gathering for lunch at a local restaurant, Santa Monica Brew Works! Please come share your story, […]
Mix it Up Social Hour - We will mix a special seasonal cocktail together, toast the season, and spend some social time together. RSVP Here
North and South Carolina friends, please join us for our monthly "Third Thursday" meeting! RSVP Here
Exact Time TBD Join us in Portland, Oregon for an enriching QiGong practice with Trish Kean, one of our fellow FSHDers. Trish has maintained a daily QiGong practice since 2005. She has trained under the guidance of Master Zhongxian Wu and has her certification in several QiGong lineages. She has found her QiGong practice very […]
North and South Carolina friends, please join us for our 'Third Thursday' chapter meeting! RSVP: Chapter Meeting RSVP
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 […]
Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! ~Glen Denehie, North Texas Chapter Director RSVP Here
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT Canada-Wide Online Meeting, hosted by Alberta, providing updates on what is important and relevant to Canadians living with FSHD in 2026. We will have several guest speakers: Neil Camarta to provide updates on FSHD Canada Foundation and the work they are doing. Blaine Penny […]
Join your Virginia Chapter Directors, Mollie & Gary, as we share what we learned at the 2026 FSHD Society Volunteer Leadership Summit. We gathered for two days of intensive learning, sharing, brainstorming, and collaborating with other chapter directors and directors of the FSHD Society and now it's time to share that knowledge with you! Please […]
Join us at our upcoming FSHD 360 regional conference where you’ll hear directly from experts and medical professionals about the latest in research, treatments, and care. You’ll also be able to connect with other patients, families, and caregivers, making this a powerful space for everyone to learn and grow together. This event covers more than […]
Come join us for the first New England Chapter meeting of the year. I am eager to share with you the latest information from the January Volunteer Leadership Summit, including: what you need to know to be treatment ready, the current drug development landscape, important government advocacy and an exciting high-five challenge to raise awareness. […]
This is a gathering meeting for the NY/NJ Chapter. Agenda will primarily focus on interaction and collaboration. RSVP: Chapter Meeting RSVP
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 […]
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 […]
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 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
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
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 […]
A time to connect, and share some updates: New advocacy updates An upcoming casual luncheon for our group near Framingham, MA on April 25th Share a short inspirational video from Spain for FSHD Awareness The upcoming multi-chapter meeting on April 14, featuring Dr. Michelle Mellion speaking about "Understanding gene therapy and AAV technology" New nutritional […]
We’re excited to invite you to our first Multi-Chapter Meeting of 2026 - a virtual event that brings together several FSHD chapters (based on time zone) for updates and peer connection. These meetings are designed to strengthen our chapter network and keep our community informed and connected. April's topic: "Understanding Gene Therapy and AAV technology […]
We’re excited to invite you to our first Multi-Chapter Meeting of 2026 - a virtual event that brings together several FSHD chapters (based on time zone) for updates and peer connection. These meetings are designed to strengthen our chapter network and keep our community informed and connected. April's topic: "Understanding Gene Therapy and AAV technology […]
Join the Dakotas Chapter at our next in-person meeting to catch up with one another and provide support as we navigate life with FSHD. Address: <p data-pm-slice="1 1 Register Now
Come join us for an informal gathering to meet up with other FSHD New Englanders. This is a great opportunity to connect with our local community while enjoying a casual lunch. The restaurant is handicap accessible and an easy on-off from the highway. Reservations are required no later than April 22. Hope to see you […]
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 […]
Hi Ontario Members, Spring is here, and I’d love for us to get together for a casual gathering. This time we will meet in York region. Everyone is welcome, family and friends included. Bring something to sit on and even a picnic if you’d like. We’ll chat, talk about the latest research, and share tips […]
We’d love to see you (in person)! We will have light refreshments and good conversations! <p data-pm-slice="1 1 Register Now
May 19, 2026 6:30 PM in Eastern Time (US and Canada) Description Join the New York City Chapter for FSHD Society updates and collaboration. Register Now
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 […]
Saturday, May 30, 2026 Horaire de la conférence : 10h00 à 15h30 | Program runs from 10:00 am - 3:30 pm Lieu | Location: Hôtel Alt Quartier DIX30 | Alt Hotel Quartier DIX30 6500 Boul. de Rome, Brossard, QC, Canada, J4Y 0B6 2026 FSHD 360 Quebec Registrations 2026 FSHD 360 Quebec Info Page À propos […]
San Diego Chapter In-Person Gathering 11:30am - 2:00pm PT The PRADO at Balboa Park 1549 El Prado Suite 12, San Diego, CA 92101 We will discuss FSHD Clinical Trials, life hacks, Walk/Roll (9.30.26) and more. Come early, stay late to enjoy the museums, promenade, Spreckels Organ Music, Spanish Village Artists and Balboa Park festivities. Reservations […]
Join us for the latest news from the FSHD Society and to discuss World FSHD Day (June 20), upcoming events and activities, and the Walk and Roll. <p data-pm-slice="1 1 Register Now
June 2, 2026 | 7:00-8:00pm PT Hi Nevada Chapter - Let's have a virtual meeting to catch up and discuss the Walk & Roll! Register Now
June 10th, 2026 | 5:00-6:30pm PT Hosted by the British Columbia Chapter THIS IS A MEETING YOU WON'T WANT TO MISS! Eva Chin of SOLVE FSHD will be offering an update along with some exciting news for BC Chapter members! Via Zoom, Eva will get us all up to speed on the progress that was […]
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 […]
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 […]
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 […]
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 […]
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
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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