2024 New Jersey Shore Walk & Roll to Cure FSHD Sunday, September 29, 2024 At the end of the Seaside Boardwalk (Ocean Terrace & Hiering Avenue), Seaside Heights, NJ Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT UPDATE: We have reschedule for October 9 due to Rosh Hashanah falling on October 2 this year. After a move or new environment, we have to adjust to a new environment, including costs for personal... Read More »
Alberta Chapter Virtual Meeting All Canadian FSHD Community Members Welcome Wednesday, October 2, 2024 7:00pm - 8:00pm MT RSVP: https://go.fshdsociety.org/l/701273/2023-01-17/42q91r Following the disappointing news from Fulcrum, Neil Camarta will be presenting slides indicating how much is going on regarding FSHD treatments & muscle regeneration (especially here in Canada), letting people know that there are still... Read More »
First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT Do you have any unique strategies to cope with the challenges presented by your FSHD? Perhaps you use your wheelchair as a fork lift, or have a grabber in every room of your house, or... Read More »
Central Texas Walk & Roll to Cure FSHD Saturday, October 5, 2024 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your... Read More »
2024 North Texas Walk & Roll to Cure FSHD Saturday, October 5, 024 Check-in opens at 1:00 PM, Walk & Roll begins promptly at 2:00 PM Location: Frisco Commons Park , 8000 McKinney Rd, Frisco, TX 75034 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to... Read More »
9:00 CT doors open. Conference 10:00 a.m. to 4:30 p.m. CT Lunch will be provided Our 2024 FSHD 360 in the Kansas City area is hosted by Dr. Jeffrey Statland of the University of Kansas Medical Center and FSHD CTRN. This is a historic time in FSHD, with new treatments on the horizon. Do you... Read More »
Greater Philadelphia Chapter Meeting Saturday, October 5, 2024, 10:00am-1:00pm ET Location: Bryn Mawr Rehabilitation Hospital - 414 Paoli Pike, Malvern PA 19355 RSVP here: https://go.fshdsociety.org/l/701273/2023-02-14/42vknk Please join us for this meeting with Julie Brown, PT, DPT, NCS, ATP/SMS, who has worked with multiple FSHD patients and can offer guidance for individuals at different stages of... Read More »
2024 Los Angeles Walk & Roll to Cure FSHD Sunday, October 6, 2024 Location: Clover Park, 2600 Ocean Park Blvd, Santa Monica, CA 90405 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and... Read More »
Western PA Chapter Virtual Meeting Tuesday, October 8, 2024 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting to talk about the disappointing news that Fulcrum has halted development of losmapimod, the first drug to reach a Phase 3 clinical trial in FSHD. We’ll also discuss our upcoming Drum and Roll to Cure FSHD! Please... Read More »
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT UPDATE: This session is cancelled because Frank is stranded in Florida and without power due to Hurricane Milton. We hope he stays safe and look forward to seeing you all in two... Read More »
2024 Virginia Walk & Roll to Cure FSHD Saturday, October 12, 2024, 10:00am Norfolk Zoo, Norfolk, VA Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Bryan Bowman DDS This month we welcome Drs. Bryan Bowman and Daniel Rexin. Dental health is important for everyone, but people with FSHD may have special challenges. Weak cheek and mouth muscles can affect bite, tooth alignment, and oral health.... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month we'll have an open conversation on whatever is on you mind. Many of you may be assessing your child's situation at school or starting college, so that could be a timely subject. Join us for our monthly Parents'... Read More »
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Good Bad Things Actor and screenwriter Danny Kurtzman and filmmaker Shane Stanger will discuss their pathbreaking feature film, Good Bad Things. The film tells the captivating story of Danny, an entrepreneur with FSHD who defies... Read More »
2024 Atlanta Walk & Roll to Cure FSHD Sunday, October 20, 2024, 10:00am at Chattahoochee Nature Center Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll be talking about how to think strategically about your career when you are likely to lose muscle strength and become physically disabled. What skills are good to have? What kind of education and training opportunities are there?... Read More »
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we... Read More »
Chicago Chapter Virtual Meeting Wednesday, October 23, 2024 | 4:00-5:00pm CT Join us to discuss chapter updates and start thinking about activities for next year. We will also have the opportunity to connect and support one another.
New England Chapter Virtual Meeting Wednesday, October 23, 2024 - 7:00pm ET Please join us for our next virtual chapter meeting! We will cover: A recap of our recent Walk & Roll An overview of our FSHD 360 event taking place on November 2nd - June Kinoshita, Senior Director of Research and Education at the... Read More »
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In this “Feeling Fit” session, Frank Hanley will present the second half of the “Breathe, Stretch and Flex” exercises. He will review the exercises presented in the first session (breathing, neck, shoulders,... 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 care partners (the term we... Read More »
Co-hosted by the UMass Wellstone Center for FSHD and the FSHD Society FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in New England, as well as from biopharmaceutical companies that... Read More »
Pacific Northwest Chapter Winter Education Meeting November 2, 2024, Noon to 2pm Topic: Strength Training for Rehabilitation and Maintenance in FSHD. Our guest speaker will be Alex Walker of Walker Weightlifting. Together with a few of his FSHD clients Alex will share: - insights into the benefits of strength training for rehabilitation and maintenance in... Read More »
