Pacific Northwest Chapter Meeting Sunday, May 1, 2022 12:00PM PT Please join us for a virtual meeting for a discussion of nutrition supplementation from a holistic nutrition approach. Our speaker... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Warmer weather will soon be here!! Many in the WOW... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Access to genetic testing for FSHD has long been a problem in our field. Many doctors... Read More »
North Texas Chapter Kick Off Meeting! Saturday, May 7th, 2022 1:00pm-3:00pm Central Time Farmers Branch Rec Center The Oak Room 14050 Heartside Place Farmers Branch, TX Please join us for... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Self-compassion is simply about treating ourselves in difficult times with the same kindness and compassion... Read More »
Tuesday, May 10th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio:... Read More »
Wednesday, May 11th, 2022 7pm ET | 6pm CT | 5pm MT | 4pm PT We hope you can join us for the next virtual meeting of the New England... Read More »
All California Chapters Meeting Resiliency in Living with FSHD Sunday, May 15th, 2022 2:00pm Pacific Time Please join us for Part 2 of Resiliency in Living with FSHD. Our guest speakers,... Read More »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Get to know your fellow GenZers at this social gathering! This month, Russ Caratenuto, currently a... Read More »
Trivia Night, hosted by the Mid-Atlantic Chapter Sunday, May 15th 2022 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom (link to be provided to registered... Read More »
Tuesday, May 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday... Read More »
Join Drs. Johanna Hamel, Kate Eichinger, and Natalie Katz to learn about the largest natural history ever done for FSH muscular dystrophy. People of all ages can participate, and children... Read More »
Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome... Read More »
Thursday, May 26th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio:... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, one of our members, a wheelchair user, will... Read More »
St. Louis In-Person Chapter Meeting Saturday, June 4th, 2022 11:30am Central Time BC's Kitchen in the Meadows of Lake Saint Lewis 11 Meadow Circle Drive, Lake St. Louis, MO 63367... Read More »
Lab Tour & Meeting Saturday June 11th, 2022 12:30pm - 3:00pm ET Children's Hospital of Eastern Ontario (CHEO) Ottawa, ON The Ontario Chapter of the FSHD Society invites you to... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, June Kinoshita, director of research and patient education for the FSHD Society, will... Read More »
The FSHD Society’s annual FSHD International Research Congress is the premier global scientific conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. The IRC is open to all active researchers... Read More »
FSHD Connect is the FSHD Society's flagship educational conference. Held every two years, it is the world's biggest networking event for FSHD, bringing together hundreds of individuals and families living... Read More »
Saturday, June 18 - Special FSHD Connect edition 9:00 AM ET | 8:00 AM CT | 7:00 AM MT | 6:00 AM PT This month we are meeting live with... Read More »
FSHD Society Connect Watch Party Saturday, June 18th, 2022 9:00am - 3:00pm Pacific Time Boeing Museum of Flight 9094 E. Marginal Way S Seattle, WA South View Lounge Join us... Read More »
Colorado Chapter "Watch Party" Saturday, June 18th, 2022 10am - 2pm MT Southglenn Library - Meeting Rooms A&B 6972 S Vine St, Centennial, CO 80122 As you may have heard,... Read More »
Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. Visit our World FSHD Day page for ideas of... Read More »
Sunday, June 26th 2pm ET Please join us for the next virtual gathering of the North Carolina Chapter! This will be an informal meeting, and everyone is welcome to share... Read More »
Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT How can you enjoy a real vacation when you're caught up with concerns about caring for... Read More »
Wednesday, June 29th 6pm ET We hope you will join us for the next meeting of the Western PA Chapter! We will discuss takeaways from the recent Patient Connect conference,... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT FSHD is a familial condition, and yet family members can hold different attitudes about how... Read More »
Tuesday, July 12th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio:... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT The FSHD Society is conducting a new survey-based study called “The True Cost of FSHD” and... Read More »
San Diego Chapter Meeting Saturday, July 16, 2022 11:30am-1:30pm Pacific Time 115 South Clementine Street Oceanside, CA 7th Floor Meeting Room Please join us for a potluck lunch! We will be... Read More »
New England Chapter Summer Picnic Saturday, July 16th 12pm – 4pm (in-person only) New England Air Museum 36 Perimeter Road Windsor Locks, CT 06096 We hope that the entire New... Read More »
Tuesday, July 19th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday... Read More »
Team Captain Happy Hour! Thursday, July 21st 4pm PT | 5pm MT | 6pm CT | 7pm ET Ending FSHD will take all of us and that’s why the Walk... Read More »
Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved... Read More »
Thursday, July 28th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio:... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we continue our discussions about transitioning to assistive... Read More »
FSHD Family Picnic Saturday, August 6th 12pm – 4pm ET Adams Township Community Park 698 Valencia Rd Mars, PA 16046 We hope you can join us for the annual... Read More »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT This month, we'll be talking about fundraising! Maybe this sounds intimidating, but learning how to get... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we'd like to have some fun and give our growing group a chance... Read More »
Tuesday, August 9th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio:... Read More »
Bay Area Chapter Meeting Sunday, August 14, 2022 2:00pm - 3:00pm Pacific Time You're invited to a virtual gathering of our San Francisco Bay Area Chapter of the FSHD Society... Read More »
Tuesday, August 16th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday... Read More »
Florida Chapters: Tampa, Southwest Florida, and Northeast Florida! Wednesday, August 17th 6:30pm ET | 5:30pm CT | 4:30pm MT | 3:30pm PT Please join us for a combined virtual... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Kent Drescher, PhD Dealing with life’s slings and arrows alongside FSHD may feel like a lot,... Read More »
August 18-28, 2022 Visit all participating breweries in the San Diego area and have your name entered into a drawing for a flat screen TV. In order to receive a... Read More »
San Diego Chapter Meeting Thursday, August 18, 2022 5:30pm - 6:30pm Pacific Time The San Diego Walk & Roll is only a few weeks away!! Sign up now! Team Captain's Kick... Read More »
The 2022 Family Day at the Aquarium! The planet is alive! Explore it with us at the 2022 UPIN Family Day at the Loveland Living Planet Aquarium on Saturday, August... Read More »
Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome... Read More »
Thursday, August 25th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio:... Read More »
All Texas Chapter Meeting Tuesday, August 30th, 2022 6:30pm - 8:00pm Central Time The CenTex chapter invites you to join us for a research update from Jamshid Arjomand, FSHD Society's... Read More »
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... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month is all about self-care. Donna Russo will lead... Read More »
Please mark your calendars for the 2022 San Diego Walk & Roll to Cure FSHD! We will see you on Saturday, September 10, 2022 Please reach out to the Chapter and... Read More »
Please mark your calendars for the 2022 Pacific Northwest Walk & Roll to Cure FSHD! We will see you on Saturday, September 10, 2022 Please reach out to the Walk Leader,... Read More »
Greater Philadelphia Chapter meeting Saturday, Sept. 10th, 10:00am – 12:00pm ET Wissahickon Valley Public Library 650 W Skippack Pike, Blue Bell, PA 19422 We hope you can join us for... Read More »
Please mark your calendars for the 2022 Colorado Walk & Roll to Cure FSHD! We will see you on Sunday, September 11, 2022 Please reach out to the Walk Leader, Anne... Read More »
Please mark your calendars for the 2022 Southwest Florida Walk & Roll to Cure FSHD! We will see you on Sunday, September 11, 2022 Please reach out to Walk Leader, Heloise... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be discussing how to talk about an FSHD diagnosis with family... Read More »
Tuesday, September 13th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio:... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Mark Tarnopolsky, MD PhD Join us for a talk by Mark Tarnopolsky, MD PhD, Professor... Read More »
Please mark your calendars for the 2022 Intermountain Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Kathryn... Read More »
Please mark your calendars for the 2022 U.S. & International Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to us, with any... Read More »
Please mark your calendars for the 2022 Kansas City Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader,... Read More »
Please mark your calendars for the 2022 Canadian National Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to us, with... Read More »
Please mark your calendars for the 2022 Columbus Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Chapter Director, Sue... Read More »
Please mark your calendars for the 2022 Ontario Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Steve... Read More »
Please mark your calendars for the 2022 Dakotas Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Bryan... Read More »
Please mark your calendars for the 2022 Wisconsin Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader,... Read More »
Please mark your calendars for the 2022 St. Louis Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Chapter Director,... Read More »
Please mark your calendars for the 2022 South Carolina Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to Walk Leader,... Read More »
Please mark your calendars for the 2022 Arizona Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Ally... Read More »
Please mark your calendars for the 2022 Chicago Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Susie... Read More »
Please mark your calendars for the 2022 North Carolina Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader,... Read More »
Please mark your calendars for the 2022 Philadelphia Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out with any questions! Wecan... Read More »
Please mark your calendars for the 2022 Bay Area Walk & Roll to Cure FSHD! We will see you on Sunday, September 18, 2022 Please reach out to the Chapter and Walk... Read More »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Get to know your fellow GenZers at this fun gathering! We'll be planning a fun and... Read More »
Tuesday, September 20th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday... Read More »
Thursday, September 22nd 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio:... Read More »
Please mark your calendars for the 2022 Mid Atlantic Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 at the Alpha Ridge Park in Marriotsville,... Read More »
Please mark your calendars for the 2022 NE Florida Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 Please reach out to the Walk Leader,... Read More »
Please mark your calendars for the 2022 Virginia Walk & Roll to Cure FSHD! We will see you on Saturday, September 14, 2022 Please reach out to the Walk Leader, Jodie... Read More »
Please mark your calendars for the 2022 West Michigan Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 Please reach out to the Walk Leader, with... Read More »
Please mark your calendars for the 2022 North Texas Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 Please reach out to the Walk Leader,... Read More »
Please mark your calendars for the 2022 Minnesota Walk & Roll to Cure FSHD! We will see you on Sunday, September 25, 2022 Please reach out to the Chapter Director, Jacob... Read More »
Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome... Read More »
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... Read More »
Please mark your calendars for the 2022 New England Walk & Roll to Cure FSHD! We will see you on Saturday, October 1, 2022 Please reach out to the Walk Leader,... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women... Read More »
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... Read More »
Tuesday, October 11th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio:... Read More »
Please mark your calendar for the 2022 Los Angeles Walk & Roll to Cure FSHD! We will see you Saturday, October 15, 2022 Please reach out to the Walk Leader,... Read More »
Please mark your calendars for the 2022 Atlanta Walk & Roll to Cure FSHD! We will see you on Sunday, October 16, 2022 Please reach out to the Chapter Director, Jack... Read More »
Tuesday, October 18th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Join Drs. Michael Cole, Kathy Mathews, Christopher Cooper, and Eyad Hanna, of the University of... Read More »
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