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FSHD Society Radio – Max Adler on Walk & Roll 2021
You Tube9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Note: we have changed the date to September 7 for this month only. Tonight's featured... Read More »
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2021 Chicago Walk & Roll to Cure FSHD!
Chicago ILPlease mark your calendars for the Virtual 2021 Chicago Walk & Roll! We will see you on Saturday, September 11, 2021 Please reach out to the Chapter Director, Dave Lukas,... Read More »
2021 Columbus Walk & Roll to Cure FSHD!
Coffman Park Pavillion 5200 Emerald Pkwy, Dublin, OHPlease mark your calendars for the 2021 Columbus Walk & Roll to Cure FSHD! We will see you on Saturday, September 11, 2021 Please reach out to the Walk Leader,... Read More »
2021 New England Walk & Roll to Cure FSHD!
Optum Building Rooftop 1325 Boylston Street, Boston, MAPlease mark your calendars for the 2021 New England Walk & Roll! Join us for a lunch celebration on the Optum Roofdeck from 11:00am - 2:00pm Please reach out to... Read More »
2021 Colorado Walk & Roll to Cure FSHD!
Phillip S. Miller Park 1375 W Plum Creek Pkwy, Castle Rock, COPlease mark your calendars for the 2021 Colorado Walk & Roll! We will see you on Sunday, September 12, 2021 Please reach out to the Walk Leader, Anne Babcock, with... Read More »
2021 South Carolina Walk & Roll to Cure FSHD!
Myrtle Beach Myrtle Beach, South CarolinaPlease mark your calendars for the 2021 South Carolina Walk & Roll! We will see you on Saturday, September 12, 2021 Please reach out to the Chapter Director, Sam Miller,... Read More »
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Wellness Hour (Virtual Meeting) – Fatigue!
Join us this month for a conversation on a subject that most people with FSHD are all too familiar with--fatigue. When does it hit you? How do you cope when... Read More »
San Diego re:Connect
San Diego San Diego, CATuesday, September 14, 2021 11:30am - 2:00pm Join HERE Please join us as we re:Connect as a chapter on Tuesday, September 14th. We are planning on virtual for now, but... Read More »
2021 NE Florida Walk & Roll to Cure FSHD!
Jacksonville Zoo 370 Zoo Pkwy, Jacksonville, FLPlease mark your calendars for the 2021 NE Florida Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Christi Thissen,... Read More »
2021 East Tennessee Walk & Roll to Cure FSHD!
East Tennessee knoxville, TNPlease mark your calendars for the Virtual 2021 East Tennessee Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Candice... Read More »
2021 Ontario Walk & Roll to Cure FSHD!
Lake Aquitaine Park 6655 GLEN ERIN DR, Mississauga, OntarioPlease mark your calendars for the 2021 Ontario Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Walk Leader, Steve Johnston, with... Read More »
2021 Southwest Florida Walk & Roll to Cure FSHD!
Baker Park 50 Riverside CircleNaples,Please mark your calendars for the 2021 Southwest Florida Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Heloise Hoffmann,... Read More »
2021 International Walk & Roll to Cure FSHD!
International Virtual Walk & RollPlease mark your calendars for the 2021 International Walk & Roll! We will "see" you virtually on Saturday, September 18, 2021! Please reach out to the FSHD Society with any... Read More »
2021 Dakotas Walk & Roll to Cure FSHD!
Urban Plains Park 3020 51st Street, Fargo, NDPlease mark your calendars for the 2021 Dakotas Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Bryan Domholt, with... Read More »
2021 Idaho Walk & Roll to Cure FSHD
Julius M. Kleiner Memorial Park 1900 N. Records Ave, Meridian, IDRegister Today! The Idaho Walk & Roll to Cure FSHD will take place on Saturday, September 18th. This event is for everyone who want sto make a difference for FSHD.... Read More »
2021 St. Louis Walk & Roll to Cure FSHD!
Boulevard Park - Lake St. Louis, MO 2550 Lake St Louis Blvd, Lake St. Louis, MOPlease mark your calendars for the 2021 St. Louis Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Marsha Sverdrup,... Read More »
2021 Utah Walk & Roll to Cure FSHD!
Canyon Rim Park East Pavillion 3100 S Grace Street, Millcreek, UTPlease mark your calendars for the 2021 Utah Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Allison Calder, with... Read More »
2021 California Walk & Roll to Cure FSHD!
California Los Angeles, CAPlease mark your calendars for the VIRTUAL 2021 California Walk & Roll! We will "see" you on Saturday, September 18, 2021 Please reach out to the Chapter Directors, Amy Bekier or... Read More »
2021 North Carolina Walk & Roll to Cure FSHD!
North Carolina NCPlease mark your calendars for the Virtual 2021 North Carolina Walk & Roll! We will "see" you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Meredith... Read More »
2021 Kansas City Walk & Roll to Cure FSHD!
Kansas City Kansas City, MOPlease mark your calendars for the Virtual 2021 Kansas City Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Kiley... Read More »
2021 Wisconsin Walk & Roll to Cure FSHD!
Wisconsin WIPlease mark your calendars for the Virtual 2021 Wisonsin City Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Tim... Read More »
2021 Mid-Atlantic Walk & Roll to Cure FSHD!
Mid-Atlantic DCPlease mark your calendars for the 2021 Mid-Atlantic Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Ann Kolakowski, with... Read More »
2021 Central Texas Walk & Roll to Cure FSHD!
Founders Park Pavillion 419 Founders Park RoadDripping Springs,Please mark your calendars for the 2021 Central Texas Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Ashley Bryan,... Read More »
2021 Dallas Walk & Roll to Cure FSHD!
Dallas Dallas, TXPlease mark your calendars for the 2021 Virtual Dallas Walk & Roll! We will "see" you on Saturday, September 18, 2021 Please reach out to us at FSHCommunity@FSHDSociety.org
2021 Arizona Walk & Roll to Cure FSHD!
Silverlake Park 2420 South Kino PkwyTucson,Please mark your calendars for the 2021 Arizona Walk & Roll! We will see you on Saturday, September 18, 2021 Check-in 9am | Ceremonial Walk/Roll 10am at Silverlake Park, Tucson... Read More »
2021 Atlanta Walk & Roll to Cure FSHD!
Atlanta, GA Atlanta, GAPlease mark your calendars for the 2021 Atlanta Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Jack Gerblick, with... Read More »
2021 Philadelphia Walk & Roll to Cure FSHD!
Wissahickon Valley Public Library, Community Room 650 Skippack Pike - Blue Bell, Blue Bell, PAPlease mark your calendars for the Virtual 2021 Philadelphia Walk & Roll! Though our Walk & Roll will be virtual this year, we will gather for a celebratory Chapter meeting... Read More »
2021 Minnesota Walk & Roll to Cure FSHD!
Mount Normandale Lake Bandshell 5901 West 84th Street, Bloomington, MNPlease mark your calendars for the 2021 Minnesota Walk & Roll! We will see you on Sunday, September 19, 2021 Please reach out to the Chapter Director, Jacob Wise, with... Read More »
2021 Pacific Northwest Walk & Roll to Cure FSHD!
Town Square Park 31600 Pete von Reichbauer Way S,, Federal Way, WAPlease mark your calendars for the 2021 Pacific Northwest Walk & Roll! We will see you on Sunday, September 19, 2021 Please reach out to the Walk & Roll Leader,... Read More »
Featured
FSHD University: The Mattering Effect: How Feeling Valued and Adding Value Shape our Lives
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Presented by Isaac and Ora Prilleltensky. Mattering consists of feeling valued and adding value, to... Read More »
Western PA Drum & Roll Planning Meeting
Western PA Virtual Pittsburgh, PAThursday, September 23, 2021 6:00pm Eastern Time Please join us for a virtual meeting of the Western PA Chapter to help plan for our Drum & Roll to Cure FSH... Read More »
FSHD 360 UCLA
Tamkin Auditorium, Ronald Reagan Hospital 757 Westwood Plaza, Los Angeles, CAMeet the dedicated clinicians and researchers at UCLA at this year's FSHD 360 Los Angeles conference. Dr. Perry Shieh and his team will answer your questions about your health, genetic... Read More »
North Carolina Virtual Chapter Meeting
North Carolina NCSaturday, September 25, 2021 3:00pm-5:00pm Eastern Time Please join us for the next virtual gathering of the North Carolina Chapter, this Saturday, September 25th, 3pm ET! This will be an... Read More »
Early-onset Chapter Meeting with Dr. Natalie Katz
Zoom Virtual MeetingThe Early-onset FSHD Chapter is hosting a meeting for all families impacted by early-onset or infantile FSHD. September 27th 2:00 MST/PT, 3:00 MT, 4:00 CT, 5:00 ET Our special guest... Read More »
Virginia Monthly Meeting
Virginia VAPlease 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
Sharegiver Hour
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 »
Targeting a Cure
Tampa Bay Sporting Clays 10514 Ehren's Cutoff, Land O'Lakes, FLJoin Us on Saturday, October 2, 2021 George Pollock Jr, Founder of the FSHD Cycling Team, is hosting the first annual "Targeting a Cure for FSHD" to raise awareness and... Read More »
Western PA Chapter Meeting & Celebration
West End-Elliott Overlook Park (Elmer Creek Pavilion) Marlow St., Pittsburgh, PASunday, October 3, 1:00 p.m. West End-Elliott Overlook Park (Elmer Clark Pavilion) Marlow Street, Pittsburgh, PA 15205 Together we can ensure no one on this journey travels alone. The Western... Read More »
Women on Wellness
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 »
New England Connections
Zoom Virtual MeetingPlease join us for our quarterly virtual chapter meeting! We welcome new friends, so please feel free to dial in from anywhere. We look forward to "seeing"/meeting you soon! -Kathy... Read More »
Featured
GenZ of FSHD meet-up and launch party
5:00 pm US ET | 4:00 pm US CT | 3:00 pm US MT | 2:00 pm US PT Use the World Clock time converter to figure out your local... Read More »
Featured
Wellness Hour (Virtual Meeting)
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, FSHD Society member Donna Russo will start things off with a 15-minute chair... Read More »
South Carolina Chapter Meeting
Zoom Virtual MeetingPlease JOIN US for our Fall South Carolina Chapter meeting! Tuesday October 12th, 2021 - 8-9 PM Eastern Time Our gatherings are informal, and we welcome new friends! Please stay... Read More »
Featured
FSHD Society Radio on our Early-Onset chapter
You TubeTuesday, October 12 Ally Roets & her son Sam. 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests are Ally Roets... Read More »
Featured
FSHD University: Pregnancy and reproductive genetic counseling
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, and... Read More »
Chicago Virtual Chapter Meeting
Chicago ILSaturday, Oct. 23rd, 2021, 10am CT 11am ET | 10am CT | 9am MT | 8am PT Via Zoom: https://us02web.zoom.us/j/82661566456?pwd=VmhLTXRnNGRqYnkyd2dLRExEUTZaZz09 It’s been a while since we got together as a... Read More »
Virginia Monthly Meeting
Virginia VAPlease 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 »
Sharegiver Hour
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 »
FSHD 360 VCU
Virginia Commonwealth University Larrick Center, 900 Turpin Street, Richmond, VA10:00-3:00 pm ET Virginia Commonwealth University is one of the newer members of the FSHD Clinical Trial Research Network, but its director Nick Johnson, MD, has been a leader in... Read More »
Women on Wellness
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 »
Mid-Atlantic Virtual Chapter Meeting
Mid-Atlantic DCMid-Atlantic Virtual Chapter Meeting Saturday November 6, 2021 10:00am-11:00am ET We hope you will be able to join us for a very exciting virtual meeting with the Mid-Atlantic Chapter! We... Read More »
Western PA Drum & Roll
Andrew Carnegie Free Library and Music Hall 300 Beechwood Avenue, Carnegie, PAPlease mark your calendars: The 2021 Western PA Drum & Roll to Cure FSHD has been scheduled! We hope to see you on Saturday, November 6th, 2021! Event information can... Read More »
Wellness Hour (Virtual Meeting)
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for our monthly Zoom meeting on Wellness, held on the second Monday of... Read More »
Featured
FSHD University: Drug Development update
12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Jeffrey Statland, MD Our speaker this month is Jeffrey Statland, MD, co-director of the FSHD... Read More »
Magic for a Cure
Kolo Klub Hoboken, NJPlease join us for "Magic for a Cure" for FSH Muscular Dystrophy on Thursday, November 18th at the Kolo Klub in Hoboken NJ! Celebrity Magician, John Stessel, will MC... Read More »
Ontario Virtual Chapter Meeting
Ontario Ontario, OntarioSaturday, November 20, 2021 11:00am-12:30am ET Please join fellow patient Emily Caouette for an extended-length session as she shares her FSH journey. Learn how she's improved her pain from years of... Read More »
Virginia Monthly Meeting
Virginia VAPlease 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 »
Sharegiver Hour
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 »
Women on Wellness
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 »
Columbus Chapter Meeting
Nationwide Children’s Hospital’s, Center for Gene Therapy 700 Children's Drive - Columbus, Columbus, OHSaturday, Dec. 11th, 2021 1pm – 2:30pm ET Harper Lab, Center for Gene Therapy, Nationwide Children’s Hospital 700 Children’s Drive, Rm. WA3015 Columbus, OH 43205 Please join us for an... Read More »
Wellness Hour (Virtual Meeting)
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for our monthly Zoom meeting on Wellness, held on the second Monday of... Read More »
Featured
FSHD University: Orthotics for FSHD
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Speaker TBA. In this webinar sponsored by Allard, we will explore the use of orthotics... Read More »
Virginia Monthly Meeting
Virginia VAPlease 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 »
Sharegiver Hour
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 »
Women on Wellness
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 »
Women on Wellness
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 »
Women on Wellness
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 »
Women on Wellness
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 »
Women on Wellness
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 »
Women on Wellness
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 »
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 »
Women on Wellness
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 »
Women on Wellness
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 »
Women on Wellness
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 »
Women on Wellness
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 »
Women on Wellness
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 »
Women on Wellness
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 »