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 stamp, you must purchase at least one full-priced beer from that brewery. You may start and end at any brewery you like. Take all the... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT We're going to cover two topics this month. The first topic is "Have you purchased equipment to help with your FSHD partner's activity? Like lifts, power wheelchairs, braces, hearing aids, vehicles, ramps installed for access in your house, staircase lifts? Was... 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 Chief Science Officer. We will also discuss Texas events like the Ft. Worth Walk & Roll and Central Texas Tacos & Tunes. We can't wait to "see"... Read More »
Thursday, September 1, 2022 6:00pm ET Via Zoom We hope you'll join us virtually on September 1st for our official kickoff of the Western Pennsylvania Chapter's 2022 Drum & Roll celebration! The Drum & Roll to Cure FSHD is a unique and fun event, featuring West African music and dance - and can be adapted to... 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 a session on chair yoga, and Ranae Beeker and Ora Prilleltensky will discuss the practice of mindful self-compassion--showing yourself the same compassion you extend to... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand any... 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 Walk Leader, Amy Bekier, with any questions! She can be reached at SanDiegoChapter@FSHDSociety.org. We look forward to seeing you on September 10th!
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, Selina Lai, with any questions! She can be reached at PNWWnR@FSHDSociety.org. We look forward to seeing you on September 10th!
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 the next meeting of the Greater Philadelphia Chapter! This will provide an opportunity to discuss the Fulcrum trial and several other topics. There is so... 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 Babcock, with any questions! She can be reached at COWnR@FSHDSociety.org. We look forward to seeing you on September 11th!
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 Hoffmann, with any questions! She can be reached at SWFloridaChapter@FSHDSociety.org. We look forward to seeing you on September 11th!
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 members who may be at risk, particularly children. When do we tell them, if ever? How do we tell them? What can go wrong? We... 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: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... 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 of Pediatrics and Medicine and Director of Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center in Hamilton, Ontario, Canada. Dr. Tarnopolsky is also CEO and... Read More »
Tim Hollenback, FSHD Radio host Tune in to the 3rd Annual Walk & Roll Livestream Celebration on Facebook@FSHDSociety Saturday, September 17, 2022 9:30am-12:30pm Eastern | 6:30-9:30am Pacific LIVE on our Facebook page @FSHDSociety FSHD Radio podcast host, Tim Hollenback, will host a 3-hour, coast to coast party @FSHDSociety. Walkers and Rollers will check in live... 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 Pyne, with any questions! She can be reached at UtahWnR@fshdsociety.org. We look forward to seeing you on September 17!
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, Kiley Higgs, with any questions! She can be reached at KansasCityChapter@FSHDSociety.org. We look forward to seeing you on September 17th!
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 any questions! Info@FSHDSociety.org. We look forward to September 17th!
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 Aumiller, with any questions! He can be reached at ColumbusChapter@FSHDSociety.org. We look forward to seeing you on September 17th!
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 Domholt, with any questions! He can be reached at DakotasChapter@fshdsociety.org. We look forward to seeing you on September 17!
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, Sam Miller, with any questions! He can be reached at SouthCarolinaChapter@FSHDSociety.org. We look forward to seeing you on September 17th!
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, Tim Hollenbeck, with any questions! He can be reached at WisconsinChapter@fshdsociety.org. We look forward to "seeing" you on September 17!
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, Marsha Sverdrup, with any questions! He can be reached at StLouisChapter@FSHDSociety.org. We look forward to seeing you on September 17th!
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 Johnston, with any questions! He can be reached at OntarioWnR@FSHDSociety.org. We look forward to seeing you on September 17th!
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 Roets, with any questions! She can be reached at ArizonaChapter@FSHDSociety.org. We look forward to seeing you on September 17!
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 Kanewske, with any questions! She can be reached at ChicagoChapter@FSHDSociety.org. We look forward to seeing you on September 17!
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 be reached at FSHCommunity@FSHDSociety.org. We look forward to seeing you on September 17th!
Please mark your calendars for the 2022 North Carolina Walk & Roll to Cure FSHD! Join us virtually from your favorite park, neighborhood, or trail! Saturday, September 17, 2022 Please reach out to the Walk Leader, Meredith Huml, with any questions! She can be reached at NCChapter@FSHDSociety.org. We look forward to "seeing" you on September... 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 Leaders, Sue and Kent Drescher, with any questions! She can be reached at BayAreaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
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 of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Our meeting on Sept. 8 focused on techniques to strengthen the abs and breathing. We hope you've had to practice on your own. Today's meeting will give everyone a chance to share what they have done, note any issues... 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: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... 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 any questions! We look forward to seeing you on September 24!
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, with any questions! We look forward to seeing you on September 24!
Please mark your calendars for the 2022 Virginia Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 Please reach out to the Walk Leader, Jodie Howell, with any questions! She can be reached at VirginiaChapter@fshdsociety.org. We look forward to seeing you on September 24!
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, MD! Please reach out to the Walk Leader, Ann Kolakowski, with any questions! She can be reached at MidAtlanticChapter@FSHDSociety.org. We look forward to seeing you... 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 for a pregame picnic at the Jacksonville Jumbo Shrimps baseball game! Please reach out to the Walk Leader, Christi Thissen, with any questions! She can be reached at NEFloridaChapter@FSHDSociety.org. We look forward... 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 Wise, with any questions! He can be reached at MinnesotaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
Dear FSHD Society friends, We want to make sure that you know about a fantastic opportunity to support a fellow FSHD’er: The world premiere of the play, All of Me, is showing at the Barrington Stage Company in Pittsfield, MA! The lead character is played by Madison Ferris, actress and Broadway star living with FSHD.... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month is "Talking about FSHD with family and friends." Sharing a diagnosis when first given, planning for family, and planning ahead for care as we age. This monthly meeting is for those of you who are providing care... 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 all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... 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, Lexi Pappas, with any questions! She can be reached at AlexiPappas19@gmail.com. We look forward to seeing you on October 1!
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