Please 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 »
Please 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 »
Please 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 »
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 »
Please 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 »
Please 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 »
Register 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 »
Please 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 »
Please 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 »
Please 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 »
Please 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 »
Please 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 »
Please 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 »
Please 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 »
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 »
Please 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
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 »
Please 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 »
Please 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 »
Please 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 »
Please 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 »
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 »
Thursday, 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 »
Meet 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 »
Saturday, 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 »
The 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 »
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 »
Join 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 »
Sunday, 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 »
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 »
Please 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 »
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 »
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 »
Please 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 »
Tuesday, 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 »
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 »
Saturday, 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 »
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 »
10:00-3:00 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 »
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 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 »
Please 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 »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Matt Beke, University of Florida Food is essential to our health and is also laden... Read More »
Tuesday, November 9 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests is our chief science officer, Jamshid Arjomand, PhD! He'll... Read More »
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 »
Please 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 an... Read More »
Saturday, 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 »
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 »
Tim Hollenback, FSHD Radio host #GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. On Tuesday, November 30th, we... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Matt Beke, University of Florida We’ve invited Matt Beke, a clinical dietician at the Fixel Center... 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's Women on Wellness meeting will discuss menopause in... Read More »
Saturday, Dec. 11th, 2021 1pm – 2:30pm ET Discovery Auditorium, Nationwide Children’s Hospital 700 Children’s Drive Columbus, OH 43205 Please join us for an exciting Columbus Chapter Meeting, held at... Read More »
Sunday, December 12, 2021 1:00pm - 2:00pm PT Please join us as Dr. Bill Lewis provided information about participating in the research study he is heading up at UC Davis.... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us this month to learn about stress reduction through Mindfulness. Dr. Jennifer Egert will... Read More »
Tuesday, December 14, 2021 8:00pm Eastern/5:00pm Pacific Please join us for the December Early-Onset Parent Roundtable, where parents meet to exchange ideas, offer support, and gain insight to keep our... Read More »
Tuesday, December 14 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month’s guests will be Sam Ray, a 15-year-old, in Tucson, AZ,... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Bob Meier, CO Bob Meier, certified orthotist, is back to present on a topic that... Read More »
4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT This is the virtual meeting of the GenZ of FSHD group, for people with FSHD... 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 As we close out the year, we'll gather to share companionship and conversation. What has the... 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 Join us this month to learn about what to think about when choosing a power... Read More »
Tuesday, January 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 »
Saturday, January 15, 2022 10:00am-11:30am PT Please join us for coffee hour for a casual meet up to plan future meetings and to check in with other chapter members!... Read More »
Tuesday, January 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 »
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 Jennifer Egert, PhD Join psychologist and mindfulness instructor Jennifer Egert, PhD, to learn about mindfulness meditation... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Presented by Jos IJspeert, MSc, Radboud University Medical Center Jos IJspeert, Radboud University Medical Center Shoulder... Read More »
Thursday, January 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 At our meeting this month, we'll converse about navigating our... Read More »
SW Florida In-person Chapter Meeting Sunday, February 06, 2022 3:30pm ET Happy 2022! It’s been such a long time since we’ve been able to gather as a chapter. Let’s change... Read More »
Tuesday, February 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 »
Wednesday, February 9, 2022 7:00pm-8:00pm EST Please join us for the first New England chapter meeting of 2022! We look forward to “seeing” everyone again soon. This meeting will be... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we thought we'd explore the topic of ableism--and in particular ableist concepts that... Read More »
Tuesday, February 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 »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Eva Chin, PhD With Eva Chin, PhD. Eva is Executive Director of Solve FSHD, a recently... 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, February 24th 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 »
Saturday, Feb. 26th 4pm ET | 3pm CT | 2pm MT | 1pm PT Please join us for the next virtual gathering of the North Carolina Chapter, this Saturday,... Read More »
Thank you for helping us spread awareness about FSH muscular dystrophy on Rare Disease Day! Rare Disease Day occurs every year on the last day of February. On February 28th, we hope... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT The March meeting of the Women on Wellness (WOW) will... Read More »
Pacific Northwest Chapter Hybrid Meeting Saturday, March 5, 2022 12:00pm - 2:00pm Pacific Time 2210 7th St NW, Gig Harbor, WA Home of Selina, Russell & Stuart Lai Path to... Read More »
Tuesday, March 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 »
Western PA Chapter Virtual Meeting Thursday, March 10, 2022 6:00 p.m. Eastern Time|5:00 Central Time|4:00 Mountain Time|3:00 Pacific Time Please join us for the first Western PA Chapter meeting of... Read More »
All California Chapters Meeting March 13, 2022 2:00PM PT|3:00PM MT|4:00PM CT|5:00PM ETAs the world opens and spring arrives we all need to re-energize. We invite you to register for a... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Jane Earl will take us on a virtual tour of her home to... Read More »
Tuesday, March 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 »
10:00 am - 3:00 pm Pacific Time Registration now open! Our Bay Area chapter and Stanford University are co-hosting this year's Bay Area FSHD 360 conference. Stanford joined the FSHD... Read More »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Get to know your fellow GenZers on March 20th at this fun gathering! We’ll play online... 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 »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Please join FSHD Society and Fulcrum Therapeutics in a community webinar announcing REACH, the 1st Phase 3... Read More »
Thursday, March 24th 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 »
Saturday, March 26th 4:00pm ET|3:00pm CT|2:00pm MT|1:00pm PT You are invited to join us for a virtual meeting of the East TN Chapter! We are looking forward to reconnecting with... Read More »
CenTex Virtual Chapter Meeting Sunday, March 27, 2022 2:00PM Central Time Please join us as we welcome our guest speaker, Jodie Howell. She will discuss with us how to become... 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 »
Saturday, April 2, 2022 10:00am ET Columbus Metropolitan Library - Dublin Branch (Meeting Room 1) 75 North Hight St. Dublin, OH 43017 Parking is located just behind the library Please... Read More »
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