FSHD Radio: Hot Off the Press with June Kinoshita
Facebook and YouTubeThursday, 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 »
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 CarePartners to join us this month! Taking a loved one to the doctor can... 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 Caring for someone with a disability can feel like a 24/7 situation. Even when you are... 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 »
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, 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 CarePartners to join us this month for an open-ended conversation about what you most... 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 is our mutual support and social group for women... Read More »
FSHD Family Picnic Saturday, August 6th 12pm – 4pm ET Adams Township Community Park 698 Valencia Rd Mars, PA 16046 Please mark your calendars for the annual summer gathering... 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, 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 »
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 »
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 »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all CarePartners to join us this month for an open-ended conversation about what you most... 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 »
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 »
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 »
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, 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 »
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 International Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to us, with any questions! Info@FSHDSociety.org.... 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 Mid Atlantic 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 NE Florida 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 Virginia Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Jodie... Read More »
Please mark your calendars for the 2022 East Tennessee 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 Southwest Florida Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to Walk Leader, Heloise... 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 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 »
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 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 Calling all CarePartners to join us this month for an open-ended conversation about what you most... 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 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 »
10:00-3:00 PM Mountain Time The FSHD Society, in collaboration with our Utah and Idaho chapters and the University of Utah, is hosting this year’s Utah FSHD 360 conference. The University... 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 CarePartners to join us this month for an open-ended conversation about what you most... Read More »
Thursday, October 27th 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 is our mutual support and social group for women... Read More »
Please mark your calendars for the 2022 Central Texas Tacos & Tunes to Cure FSHD Celebration! We will see you on Saturday, November 5, 2022 Please reach out to... Read More »
The Western PA Drum & Roll Mark your calendars: The second annual Drum & Roll will take place on Saturday, November 5th, 2022! We invite you to join us in raising... Read More »
Tuesday, November 8th 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 »
10:00-3:00 PM Central Time The FSHD Society, in collaboration with our Kansas chapter and the University of Kansas Medical Center, is hosting this year’s Kansas City FSHD 360 conference. The... 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, November 15th 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 »
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 »
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 CarePartners to join us this month for an open-ended conversation about what you most... 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, December 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 »
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 CarePartners to join us this month for an open-ended conversation about what you most... Read More »