First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're starting the year off by discussion about spreading our wings with ancillary groups. we'll also be sharing favorite life hacks and what's on our minds - setting our agenda for the coming year. We... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're starting the new year off with an ice breaker online card game. Kind of silly but it's also an effective way to stimulate interesting conversations that will help us all get to know one another better. We hope you'll... Read More »
The Alberta Chapter invites all Canadian Chapter members to join a virtual meeting on January 9th, 2024! Guest speakers include Amanda Hill, Director of Clinical Research at the FSHD Society, Neil Camarta and Craig Kelly of the FSHD Canada Foundation, and Dr. Dillon Chen of Arrowhead Pharmaceuticals. Amanda will be giving us an update on... 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 We kick off 2024 with something new and completely different. At the first session, we will launch the “0 to 1000” 14 Day Challenge… - Pick an exercise, - Start on day... Read More »
EVENT: Sacramento Chapter Meeting DATE: Thursday, January 11, 2024 TIME: 6:30 pm - 7:30 pm PT WHERE: Zoom DETAILS: Join us for our upcoming chapter meeting where we will receive an update on the status of research in the FSHD community. Dr. Bill Lewis, FSHD Society board member, Clinical Professor of Cardiovascular Medicine at UC Davis Medical Center, and Director of... Read More »
Bay Area Chapter Meeting DATE: Sunday, January 14, 2024 TIME: 1:00 pm - 3:00 pm PT WHERE: Stanford, Hoover Pavillion, Room 204, 211 Quarry Rd, Palo Alto, CA 94304 DETAILS: Please join the Bay Area chapter for our first meeting of 2024. We'll discuss updates, connect with each other, and plan for an exciting year ahead. This meeting will be held... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT In some individuals with FSHD, surgery to anchor the shoulder blades to the ribcage can help restore the ability to raise the arms above shoulder height. For the first time ever, we are convening a group of individuals who have... Read More »
Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio. On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT For parents, figuring out how to advocate in schools for a child with a disability is like venturing into a jungle without a map or a compass. Having someone to guide you is invaluable. Our guest this month is Shauna... Read More »
With Nicol Voermans, MD PhD, and Nathaniël Rasing, MD 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT While FSHD patients wait for new drugs to slow the progression of muscle weakness, Dr. Voermans emphasizes that there are many interventions already that can have... Read More »
Join us for a Virtual Meeting! Please join us for our "Welcome to 2024" meeting, with lots of exciting news about current and upcoming clinical trials, as well as our guest presenter, Anna Gilmore! Anna has moved to the new position of FSHD Navigator. As Navigator, she helps families by providing resources and information to... Read More »
Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers to receiving mobility devices and assistance, and accessibility in nature and outdoor environments. Share your thoughts, or post questions in the comments section. You can also... 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 We kick off 2024 with something new and completely different. At the first session on January 11, we launched the “0 to 1000” 14 Day Challenge… – Pick an exercise, – Start... Read More »
Idaho Chapter Anniversary Dinner DATE: Thursday, January 25, 2024 TIME: 6:30 - 8:30 pm MT WHERE: Louie's Pizza & Italian Restaurant, 2500 E Fairview Ave, Meridian, ID 83642 DETAILS: Join us for a special dinner to celebrate the anniversary of our chapter's launch! Come celebrate with our Idaho community as we reflect on the amazing work we've done as a... Read More »
7:00pm ET | 6:00pm CT| 5:00pm MT | 4:00pm PT EVENT: Columbus Chapter Meeting DATE: Wednesday, January 31, 2024 TIME: 7:00 pm – 8:00 pm EST WHERE: Zoom DETAILS: Join us for our upcoming chapter meeting! Anna Gilmore of FSHD Society will deliver an update re: current clinical trials and the clinical trial enrollment process.
