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FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're thrilled to welcome this month's guest, Marjorie Aunos, PhD, […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Families are our primary social support groups and greatly influence how we live with FSHD. […]
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT Are you a teenager diagnosed with […]
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Rescheduled from January […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Christina's World, by Andrew Wyeth Living with FSHD can stir complex […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Children with early-onset FSHD are at higher risk for respiratory insufficiency. A bad […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Anesthesia During Surgery for People with FSHD With Bruna […]
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 […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start […]
4:00 pm ET | 3:00 pm CT | 2:00 pm MT | 1:00 pm PT We are planning a special Wellness Hour event this month featuring art from our community […]
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes […]
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This is a reschedule of what had been planned for January. […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Daniel Hinds, MD This month, we'll be joined by Daniel Hinds, MD, a […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Exercise and Physical Therapy for FSHD, with Ulrike Uta, […]
Raise Your Voice! Advocacy Call to Action - FSHD University with Anna Gilmore 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT […]
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 […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with […]
Special Topic: Demonstrations and illustrations of suitable exercises for all severities of FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Kathy Senecal is providing a session on yoga […]
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This month, Kathy […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's guest will focus on hands: tips on how to strengthen and the role […]
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes […]
NEW SCHEDULE: Second Monday of every other month. Next meeting is in May 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Brun~Brianna Brianna Brun, MD, is a neuromuscular specialist at the University of Rochester. […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Physiotherapy and exercises with FSHD – Optimising mobility and […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We'll be joined by one of our FSHD rock stars, Heloise […]
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 […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We welcome back […]
Ontario FSHD 360 May 3 from 9:00 AM to 4:00 PM Co-hosted by FSHD Canada Foundation and FSHD Society Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We’re thrilled to welcome this month’s guest, Marjorie Aunos, PhD, […]
Feeling Fit with FSHD: Waking the Qi with Jennifer Eash 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | […]
Conversations that Build the FSHD Community 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join the conversation, which will be inspired by questions […]
NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. […]
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 […]
The Pediatric MOVE Study Thursday, May 15 19:00 CET | 18:00 GMT | 1:00pm Et | 12:00pm CT | 11:00am MT | 10:00am PT More than 50% of people with […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT We plan to have a guest from one of the companies working on […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living […]
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 […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with […]
FSHD University - Fulcrum's Phase 3 Clinical Trial Wednesday, May 28 1:00 p.m. ET | noon CT | 11:00 a.m. MT | 10:00 a.m. PT | 17:00 GMT | 18:00 […]
FSHD 360 Vancouver Sunday, June 1 from 10:00am-3:30pm Creekside Community Recreation Centre 1 Athletes Way, Vancouver, BC V5Y 1V4, Canada FSHD research and drug development is in a new era. […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month […]
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 […]
Save the date! The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. With the recent advances in FSHD […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each […]
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 […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living […]
Breathing with FSHD Thursday, June 26 5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT Note: This webinar is not at our usual time due to Dr. Benditt’s […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start […]
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living […]
The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. The race will take place on July […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month […]
NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. […]
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each […]
The Role of the Physiatrist in Managing FSHD Thursday, July 17 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on […]
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 […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month […]
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes […]
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living […]
Sunday, August 18, 2024 2025 Falmouth Road Race The 2025 ASICS Falmouth Road Race promises to be an exciting event celebrating 53 years of running the iconic course along the […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT The Burden of FSHD Despite the significant disease burden, […]
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 […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month […]
NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. […]
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes […]
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each […]
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.
