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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. This month, June Kinoshita,... Read More »
Tuesday, August 31, 2021 6pm ET | 5pm CT | 4pm MT | 3pm PT Join Us Virtually Here Please join us for the next meeting of the New Hampshire virtual support group! We are planning a casual, conversational meeting – so please feel free to bring your questions, ideas, and whatever is on... Read More »
9:00 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 guest is our National Walk & Roll Ambassador, actor Max Adler, who will be talking about his FSHD advocacy and this year's Walk & Roll.... Read More »
Please 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, with any questions! He can be reached at ChicagoChapter@FSHDSociety.org. We look forward to seeing you on September 11th! *If you are comfortable we will be... Read More »
Please 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, Sue Aumiller, with any questions! She can be reached at ColumbusChapter@FSHDSociety.org We look forward to seeing you on September 11th!
Please 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 the Walk Leader, Lexi Pappas, with any questions! She can be reached at alexipappas19@gmail.com. We look forward to seeing you on September 11th!
Please 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, with any questions! He can be reached at SouthCarolinaChapter@FSHDSociety.org. We look forward to seeing you on September 12th!
Please 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 any questions! She can be reached at COWnR@fshdsociety.org We look forward to seeing you on September 12th!
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 it happens? How do you avoid it? And how does fatigue and the frustration and sadness of not having the energy to do your work... Read More »
Tuesday, 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 as things open up, we will plan to add in-person! Hope you can join us! ~Amy Bekier, San Diego Chapter Director
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, with any questions! She can be reached at NEFloridaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
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, with any questions! She can be reached at SWFloridaChapter@fshdsociety.org. We look forward to seeing you on September 18th!
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 any questions! He can be reached at AtlantaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
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, with any questions! She can be reached at CenTexWnR@FSHDSociety.org We look forward to seeing you on September 18th!
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 If you are in the Phoenix Area you are invited to join the Red Scooter Riders for a pop-up walk celebration. Get the details HERE... 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 Hollenback, with any questions! He can be reached at WisconsinChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!
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 questions! FSHCommunity@FSHDSociety.org
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 Higgs, with any questions! She can be reached at KansasCityChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!
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 Sue Drescher, with any questions! They can be reached at CAWnR@FSHDSociety.org. We look forward to "seeing" you on September 18th!
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 any questions! He can be reached at DakotasChapter@FSHDSociety.org We look forward to seeing you on September 18th!
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 any questions! She can be reached at UtahChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
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 any questions! He can be reached at OntarioWnR@FSHDSociety.org. We look forward to seeing you on September 18th!
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, with any questions! She can be reached at StLouisChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
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 any questions! She can be reached at MidAtlanticChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
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 Norman, with any questions! She can be reached at EastTNChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!
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 Huml, with any questions! She can be reached at NCChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!
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. There are many ways to participate! Register to Walk & Roll, fundraise, and come join us in person for pancakes, a bounce house, and connection... 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 on Saturday, Sept. 18th at 10am at the Wissahickon Valley Public Library (650 Skippack Pike, Blue Bell PA 19422). There will also be a Zoom link available for those who cannot... 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 any questions! He can be reached at MinnesotaChapter@FSHDSociety.org. We look forward to seeing you on September 19th!
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, Selina Lai with any questions! She can be reached at PNWWnR@FSHDSociety.org. We look forward to seeing you on September 19th!
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 ourselves and others. By feeling valued we mean being appreciated, respected, and recognized. By adding value we mean making a contribution and making a difference... 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 Muscular Dystrophy! The future is in important hands: OURS! Please help our chapter and the FSHD Society take steps today for a brighter tomorrow for... 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 counseling and testing, physical and occupational therapy, and much more. Learn about cutting-edge research at UCLA as well as promising advances in FSHD therapies from... 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 informal meeting, and everyone is welcome to share updates, ask questions, and bring your ideas. We love having this time to catch up with friends... 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 speaker will be Dr. Natalie Katz, U of Rochester. A more detailed agenda will be posted soon! Make plans to join us via Zoom for... 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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules... 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! We hope to “see” you there! Jodie Howell & Gary Lauck, Virginia Chapter Directors VirginiaChapter@fshdsociety.org
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 funds for FSH Muscular Dystrophy (FSHD). This will be a great day to re-connect with friends - old and new! Join us to shoot, to... Read More »
