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Featured
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 »
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CarePartner Hour – Going to the Doctor
Zoom Virtual Meeting8:00 – 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 »
Featured
Women on Wellness
Zoom Virtual MeetingFirst 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 Connection Event
BC's Kitchen in the Meadows of Lake St. Louis 11 Meadow Circle Drive, Lake St. Louis, MOSt. 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 »
Ontario Chapter Lab Tour and Meeting
Children's Hospital of Eastern Ontario Ottawa, OntarioLab 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 »
Wellness Hour – Ask me anything
Zoom Virtual Meeting5:00 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 »
29th Annual International Research Congress
Waldorf Astoria and Hilton Bonnet Creek 14200 Bonnet Creek Resort Lane, Orlando, FLThe 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 »
2022 FSHD Connect
Orlando, FL orlando, FLFSHD 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 »
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Early-Onset Parent Roundtable
Virtual DenverSaturday, 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 »
Pacific Northwest Connect Watch Party
Boeing Museum of Flight 9094 E. Marginal Way S, Seattle, WAFSHD 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”
Southglenn Library 6972 S. Vine St., Centennial, CO, COColorado 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 »
World FSHD Day
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 »
North Carolina Virtual Chapter Meeting
Virtual DenverSunday, 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual MeetingPlease 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 »
CarePartner Hour – We need a vacation!
Zoom Virtual Meeting8:00 – 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 »
Western PA Virtual Chapter Meeting
Virtual DenverWednesday, 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 »
Women on Wellness – Transitions in mobility
Zoom Virtual MeetingFirst 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 »
Featured
Wellness Hour – How do I talk to my family about FSHD?
Zoom Virtual Meeting5:00 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 »
Featured
FSHD Radio: Community Profiles with Dylan King
Facebook and YouTubeTuesday, 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 »
Featured
FSHD University – True Cost of FSHD
Zoom Web Conference1:00 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
115 South Clementine Street 115 South Clementine Street, Los Angeles, CASan 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
New England Air Museum 36 Perimeter Road, Windsor Locks, CTNew 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 »
Featured
GenZ of FSHD
Zoom Virtual Meeting3:00 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 »
Featured
Early-Onset Parent Roundtable
Virtual DenverTuesday, 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 »
2022 Walk & Roll Team Captain Happy Hour
Virtual DenverTeam 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual MeetingPlease 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 »
CarePartner Hour
Zoom Virtual Meeting8:00 – 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 »
Featured
FSHD Radio: Hot off the Press
Facebook and YouTubeThursday, 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 »
Women on Wellness
Zoom Virtual MeetingFirst 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 »
Western PA FSHD Family Picnic
Adams Township Community Park 698 Valencia Rd, Mars, PAFSHD 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 »
Wellness Hour
Zoom Virtual Meeting5:00 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 »
Featured
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, 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 »
Featured
Early-Onset Parent Roundtable
Virtual DenverTuesday, 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual MeetingPlease 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 »
Featured
FSHD Radio: Hot off the Press
Facebook and YouTubeThursday, 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 »
CarePartner Hour
Zoom Virtual Meeting8:00 – 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 »
Women on Wellness
Zoom Virtual MeetingFirst 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 »
2022 Pacific Northwest Walk & Roll to Cure FSHD
Town Square Park 31600 Pete von Reichbauer Way S,, Federal Way, WAPlease 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 »
2022 Colorado Walk & Roll to Cure FSHD
Philip S. Miller Park Amphitheater 210 East Wolfensberger Road, Castle Rock, COPlease 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 »
Wellness Hour
Zoom Virtual Meeting5:00 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 »
Featured
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, 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 »
2022 Intermountain Walk & Roll to Cure FSHD
Canyon Rim Park East Pavillion 3100 S Grace Street, Millcreek, UTPlease 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 »
2022 International Walk & Roll to Cure FSHD
Virtual TXPlease 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 »
2022 Kansas City Walk & Roll to Cure FSHD
Kansas City Kansas City, MOPlease 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 »
2022 Mid-Atlantic Walk & Roll to Cure FSHD
Mid-Atlantic DCPlease 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 »
2022 NE Florida Walk & Roll to Cure FSHD
NE Florida Jacksonville, FLPlease 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 »
2022 Virginia Walk & Roll to Cure FSHD
Virginia VAPlease 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 »
2022 East Tennessee Walk & Roll to Cure FSHD
East Tennessee knoxville, TNPlease 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 »
2022 Canadian National Virtual Walk & Roll to Cure FSHD
Virtual TXPlease 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 »
2022 Columbus Walk & Roll to Cure FSHD!
Coffman Park Pavillion 5200 Emerald Pkwy, Dublin, OHPlease 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 »
2022 Ontario Walk & Roll to Cure FSHD
Lake Aquitaine Park 6655 GLEN ERIN DR, Mississauga, OntarioPlease 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 »
2022 Dakotas Walk & Roll to Cure FSHD
Urban Plains Park 3020 51st Street, Fargo, NDPlease 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 »
2022 Wisconsin Virtual Walk & Roll to Cure FSHD
Wisconsin WIPlease 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 »
2022 St. Louis Walk & Roll to Cure FSHD!
Hawk Ridge Park 8392 Orf Road, Lake St. Louis, MOPlease 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 »
2022 South Carolina Virtual Walk & Roll
South Carolina SCPlease 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 »
2022 Southwest Florida Walk & Roll to Cure FSHD
Southwest Florida Naples, FLPlease 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 »
2022 North Texas Walk & Roll to Cure FSHD
Dallas Dallas, TXPlease 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 »
2022 Arizona Walk & Roll to Cure FSHD
Arizona AZPlease 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 »
2022 Chicago Walk & Roll to Cure FSHD
Chicago ILPlease 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 »
2022 North Carolina Walk & Roll to Cure FSHD
North Carolina NCPlease 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 »
2022 Philadelphia Virtual Walk & Roll
Philadelphia PAPlease 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 »
Featured
GenZ of FSHD
Zoom Virtual Meeting3:00 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 »
Featured
Early-Onset Parent Roundtable
Virtual DenverTuesday, 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 »
Featured
FSHD Radio: Hot off the Press
Facebook and YouTubeThursday, 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 »
2022 Minnesota Walk & Roll to Cure FSHD
Mount Normandale Lake Bandshell 5901 West 84th Street, Bloomington, MNPlease 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual MeetingPlease 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 »
CarePartner Hour
Zoom Virtual Meeting8:00 – 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 »
2022 New England Walk & Roll to Cure FSHD
Boston Boston, MAPlease 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 »
Women on Wellness
Zoom Virtual MeetingFirst 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 »
Wellness Hour
Zoom Virtual Meeting5:00 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 »
Featured
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, 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 »
2022 Atlanta Walk & Roll to Cure FSHD!
Chattahoochee Nature Center Ben Brady Lakeside Pavilion 9135 Willeo Rd, Roswell, GAPlease 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 »
Featured
Early-Onset Parent Roundtable
Virtual DenverTuesday, 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 »
Featured
Utah FSHD 360
University of Utah Guest House & Conference Center 110 Fort Douglas Blvd., Salt Lake City, UT10:00-3:00 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual MeetingPlease 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 »
CarePartner Hour
Zoom Virtual Meeting8:00 – 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 »
Featured
FSHD Radio: Hot off the Press
Facebook and YouTubeThursday, 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 »
Women on Wellness
Zoom Virtual MeetingFirst 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 »
2022 Central Texas Tacos & Tunes to Cure FSHD
5 Soul Wine Co 4514 Bob Wire Rd, Spicewood, TXPlease 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 »
2022 Western PA Drum and Roll
Andrew Carnegie Free Library and Music Hall 300 Beechwood Avenue, Carnegie, PAThe 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 »
Featured
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, 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 »
Featured
Kansas City FSHD 360
Kauffman Foundation Conference Center 4801 Rockhill Road, Kansas City, MO10:00-3:00 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 »
Wellness Hour
Zoom Virtual Meeting5:00 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 »
Featured
Early-Onset Parent Roundtable
Virtual DenverTuesday, 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 »
Featured
GenZ of FSHD
Zoom Virtual Meeting3:00 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual MeetingPlease 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 »
CarePartner Hour
Zoom Virtual Meeting8:00 – 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 »
Women on Wellness
Zoom Virtual MeetingFirst 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 »
Wellness Hour
Zoom Virtual Meeting5:00 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 »
Featured
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual MeetingPlease 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 »
CarePartner Hour
Zoom Virtual Meeting8:00 – 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 »