Our look is new. Our purpose is the same. Learn more about our brand evolution.
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's discussion will focus on promoting a positive outlook. […]
3:00-5:00pm ET | 2:00-4:00pm CT | 1:00-3:00pm MT | 12:00-2:00pm PT Sacramento Chapter Meeting Saturday, May 4, 2024 from 12:00 pm - 2:00 pm PT WHERE: Mimi's Cafe, 2029 Alta […]
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 we have the pleasure of […]
11:30am-12:30pm | 10:30-11:30am CT |9:30-10:30am MT | 8:30-9:30am PT Dakotas Chapter Meeting, Saturday, May 11, 2024 10:30 am - 11:30 am CT WHERE: 3247 47th St S, Fargo, ND 58104 […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Chaplain Deb Calhoun Many of us procrastinate when it comes to planning for the future, […]
In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of slow progression with Callum Arras. Bridging their nearly 20 year […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Josie Godfrey There is great progress toward new medicines for FSHD, but even when a drug […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our […]
Saturday, May 18, 2024 Join the Denver Colfax Marathon Team for the FSHD Society! The Denver Colfax Marathon is a nationally recognized event featuring unique courses incorporating the iconic landmarks […]
5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT North Carolina Chapter Social Gathering Please join us for a casual dinner on May 18th at 5pm at Floyd […]
7PM ET | 6PM CT | 5PM MT | 4PM PT Western PA Chapter - Virtual Meeting Please join us on Monday, May 20th at 7:00pm ET for our next virtual […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll learn about kratom, a medical herb, from Young Adults group co-moderator Chandler […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT CHANGE NOTICE: Instead of recapping Hill Day, we welcome our esteemed guest, Heloise Hoffmann. Heloise […]
7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for our next virtual chapter meeting, taking place on May […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure […]
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 […]
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 […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Texas Community Social Hour Wednesday, June 5, 2024 Join us for a special Texas Social Hour and come catch-up […]
7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter Virtual Meeting Join us at our next virtual chapter meeting, scheduled for Thursday, June 6th at 7pm […]
4:00-7:00pm ET | 3:00-6:00pm CT | 2:00-5:00pm MT | 1:00-4:00pm PT Pacific Northwest Day at the Ball Park Sunday, June 9, 2024, 1:00 pm - 4:00 pm PT WHERE: Cheney […]
Virtual registration open until June 9th The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians, […]
Bay Area Chapter Meeting: Connect Watch Party Join the Bay Area Chapter for a special summer chapter meeting this year in Hollister, CA. Our Bay Area Chapter Directors, Kent and […]
CONNECT 2024 will be hosted on June 15-16 in Denver, Colorado. CONNECT brings together world leaders in FSHD research, patient care, advocacy, education, and support. Held every two years, FSHD […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT This World FSHD Day join the Avidity Biosciences team as they share an update on the […]
5:30pm MT (4:30pm PT | 7:30pm ET | 6:30pm CT) Alberta Chapter - World FSHD Day Celebration Hello Alberta Chapter Friends!! WHAT: On World FSHD Day, June 20, we are […]
8:30pm ET | 7:30pm CT | 6:30pm MT | 5:30pm PT BC Chapter - World FSHD Day Celebration Event Thursday, June 20th from 5:30-8:00pm at Rogue Kitchen & Wetbar Gastown, […]
11AM - 3PM ET Summer Park Party - Michigan Chapter Please join us for an in-person social gathering on June 23rd. We are planning a summer park party from 11am […]
9:00-10:00pm ET | 8:00-9:00pm CT | 7:00-8:00pm MT | 6:00-7:00pm PT Sacramento Virtual Chapter Meeting Wednesday, July 10, 2024 6:00-7:00pm PT on Zoom Join the Sacramento Chapter for our upcoming […]
7:00-8:00pm ET | 6:00-7:00pm CT | 5:00-6:00pm MT | 4:00-5:00pm PT Chicago Chapter Virtual Meeting Thursday, July 11, 2024 via Zoom Join us for our upcoming virtual Chicago Chapter Meeting […]
Saturday, July 13, 2024 The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. George is the […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Western PA Virtual Chapter Meeting Wednesday, July 17th, 7:00pm ET We will gather for conversation and to provide 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 rpt The foods you eat impact your disease and […]
12-2pm ET | 11a-1pm CT | 10a-12pm MT | 9-11am PT New England Chapter In-Person Social Gathering Friday, July 19, 2024 from 12:00-2:00pm ET at On the Border (Rocky Hill) […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Team Captain Rally & Social Hour Wednesday, July 31st Join us for our annual Team Captain Rally where we […]
Western PA Chapter 3rd Annual Family Picnic Saturday, August 3rd, 12:00pm ET Location: Adams Township Community Park, 698 Valencia Rd., Mars, PA 16046 Please join us for this fun, in-person […]
Los Angeles Virtual Chapter Meeting Wednesday, August 7th | 6:00 - 7:00 pm PT Join us on Wednesday, August 7th from 6:00 pm - 7:00 pm for our upcoming virtual […]
Good Bad Things Theatrical Premiere For nearly a year, we’ve been following the journey of "Good Bad Things," and now, the award-winning film starring Danny Kurtzman, who lives with FSHD, […]
Sunday, August 18, 2024 2024 Falmouth Road Race The 2024 ASICS Falmouth Road Race promises to be an exciting event celebrating 52 years of running the iconic course along the […]
The Muscle to Keep Life Moving™ Monday, August 19, 2024 9:00am-6:00pm ET The Cape Club of Sharon: 25 Tiot St, Sharon MA 02067 The FSHD Society is pleased to partner […]
Atlanta Chapter Virtual Meeting: Walk & Roll Prep Monday, August 19th, 5:30-6:30pm ET Join our virtual meeting for a group brainstorm and discussion on how we can make the 2024 […]
St. Louis Chapter In-Person Support Meeting Tuesday, August 20th, 2024, 7:00-8:00pm CT Webster Groves Public Library - 301 E Lockwood Ave, Webster Groves, MO 63119 We invite all of our […]
12:00-2:00pm ET | 11:00am-1:00pm CT | 10:00am-12:00pm MT | 9:00am-11:00am PT Dakotas Chapter Meeting Saturday, August 24, 2024 Location: TBD Restaurant Join the Dakotas Chapter for a special community lunch […]
Virginia Chapter Social Event: Norfolk Tides vs. Worcester Red Sox Saturday, August 24, 2024 at 6:00pm Harbor Park Stadium, 150 Park Ave, Norfolk, VA 23510 Please join us on August […]
6:30pm ET | 5:30pm CT | 4:30pm MT | 3:30pm PT San Diego Chapter Ice Cream Social Sponsored by Kate Therapeutics Sunday, August 25, 2024 from 3:30 - 5:30pm PT […]
Southeast Multi-Chapter Virtual Meeting Tuesday, August 27, 2024 at 6:00pm ET Amy Halseth and Erika Escartin from Avidity Biosciences will give a short presentation on the recent data from FORTITUDE, […]
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 BetterLife FSHD We are thrilled to announce the premiere […]
Western PA Chapter Drum & Roll Prep Virtual Meeting Thursday, August 29, 2024 7:00-8:30pm ET RSVP here: go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting for a discussion on how we can make […]
New England Virtual Chapter Meeting Thursday, September 12, 2024 at 7:00 PM Meeting Agenda: Walk Leader, Lexi Pappas, will briefly talk about the Walk & Roll taking place on 9/22 […]
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 Insurance Coverage for Costly Rare-Disease Treatments As FSHD is […]
Virtual Screening: Good Bad Things Missed seeing Good Bad Things in theaters? Get your tickets for a virtual screening this weekend. The film will be available from 6:00pm PST on […]
Virginia Chapter Monthly Virtual Meeting Tuesday, September 24th, 6:00pm ET Please join us for this casual, conversational monthly meeting. We look forward to catching up with everyone, sharing our updates […]
Alberta Chapter Virtual Meeting All Canadian FSHD Community Members Welcome Wednesday, October 2, 2024 7:00pm - 8:00pm MT RSVP: https://go.fshdsociety.org/l/701273/2023-01-17/42q91r Following the disappointing news from Fulcrum, Neil Camarta will be […]
First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT Do you have any unique strategies to cope with the […]
9:00 CT doors open. Conference 10:00 a.m. to 4:30 p.m. CT Lunch will be provided Our 2024 FSHD 360 in the Kansas City area is hosted by Dr. Jeffrey Statland […]
Greater Philadelphia Chapter Meeting Saturday, October 5, 2024, 10:00am-1:00pm ET Location: Bryn Mawr Rehabilitation Hospital - 414 Paoli Pike, Malvern PA 19355 RSVP here: https://go.fshdsociety.org/l/701273/2023-02-14/42vknk Please join us for this […]
Western PA Chapter Virtual Meeting Tuesday, October 8, 2024 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting to talk about the disappointing news that Fulcrum has halted development of […]
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 Good Bad Things Actor and screenwriter Danny Kurtzman and […]
Chicago Chapter Virtual Meeting Wednesday, October 23, 2024 | 4:00-5:00pm CT Join us to discuss chapter updates and start thinking about activities for next year. We will also have the […]
New England Chapter Virtual Meeting Wednesday, October 23, 2024 - 7:00pm ET Please join us for our next virtual chapter meeting! We will cover: A recap of our recent Walk […]
Co-hosted by the UMass Wellstone Center for FSHD and the FSHD Society FSHD research and drug development is in a new era. Do you know what’s happening and how this […]
Pacific Northwest Chapter Winter Education Meeting November 2, 2024, Noon to 2pm Topic: Strength Training for Rehabilitation and Maintenance in FSHD. Our guest speaker will be Alex Walker of Walker […]
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 […]
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 […]
Colorado Chapter Meeting (In-Person) Sunday, November 17, 2024 | 12:00-2:00pm MT, followed by the Broncos game Landsdowne Arms Restaurant 9352 Dorchester St, Highlands Ranch, CO 80129 RSVP: https://go.fshdsociety.org/l/701273/2023-03-30/4327q4 Join the […]
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 ReSolve – What We Have Learned Presented by Kate […]
Ontario Chapter Brunch Meeting Sunday November 24th, 2024: 11:00am - 1:00pm ET Milestones Richmond Hill (30 High Tech Rd. Richmond Hill ON L4B 4L9) Join our Ontario FSHD friends for […]
It's our annual Thanksgiving Special and this year we're featuring musicians living with FSHD. Tune in for interviews, instrumentals, and more.
St. Louis Chapter Holiday Gathering Saturday, December 7th, 2:00-4:00pm CT 4Hands Brewery, 17081 N Outer 40 Rd, Chesterfield, MO 63005 RSVP: https://go.fshdsociety.org/l/701273/2023-06-22/43jsb5 Join us for a special holiday gathering to […]
Greater NYC/NJ-area Chapter Virtual Meeting - Wednesday December 11th, 6pm ET Dear NYC & NJ area FSHD Friends, Please join our local FSHD Community for a virtual meeting by zoom […]
Western PA Chapter Virtual Meeting Monday, December 16, 2024 7:00-8:30pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting to celebrate this year's accomplishments and to start discussing our plans for 2025! […]
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 Annual Drug Development Update Presented by Nicholas Johnson, MD, […]
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 Let's start the […]
New England Chapter Virtual Meeting Monday, January 13, 2025 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-03-03/42xr1c Join us for chapter and FSHD Society updates, a debrief and takeaways from the November 2nd […]
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 Mindfulness is a practice that has been shown in […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest this month is Mark Tarnopolsky, MD PhD, professor of […]
Virginia Chapter Monthly Virtual Meeting Tuesday, January 28, 2025 6:00pm - 7:00pm ET Virtual via Zoom - RSVP for the link Join our monthly meeting for casual conversations! RSVP: https://go.fshdsociety.org/l/701273/2023-03-14/42z7g7
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 […]
Tuesday, April 29, 2025, 7:00pm-8:00pm MT Virtual via Zoom – RSVP for the link Please join us for conversation and support.
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 […]
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 […]
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 […]
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 […]
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 […]
2025 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 […]
