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 clinical trial ready. There will be time for introductions and questions, so make sure to bring your questions to the meeting! We hope to “see”... 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 one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... 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 join us for the next meeting of the Columbus Chapter! At this gathering, we are planning to discuss: Planning for 2022, the expectations of the... Read More »
Saturday, April 2nd, 11am CT Chicagoland Virtual Chapter Meeting Please join us virtually for the next meeting of the Chicagoland Chapter! We will have some new faces joining us this time around, and we hope to see many of you there as well. We will be discussing all the exciting news that has been coming... 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 topic is "Body Image, Promoting Positivity within a Potentially Challenging Topic." How we individually perceive our own Body Image, as we experience the changes imposed upon us by the FSHD disease process. Acknowledging... Read More »
Idaho Talent Fest 2022 - Saturday, April 9th The FSHD Society, Idaho Chapter, will be hosting the second annual Idaho Talent Fest to Cure FSH Muscular Dystrophy (FSHD). This competition will spotlight and celebrate many talented individuals, while raising funds and awareness for those suffering from FSH Muscular Dystrophy. Finalists will perform in front of... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we'll be discussing breathing issues, which affect many in our community. We'll be joined by Dan Wilson RRT, CPFT, AE-C, a respiratory therapist with the Indiana Joint Asthma Coalition (InJAC). Dan has FSHD himself. Also joining us is... Read More »
Tuesday, April 12th 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 »
New England Virtual Chapter Meeting Wednesday, April 13th 7pm ET | 6pm CT | 5pm MT | 4pm PT Please join us for the next virtual meeting of the New England Chapter! We welcome friends old and new, from Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut…. And beyond!! For our April meeting, we will... Read More »
Tuesday, April 19th 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 »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Kathy Mathews, Shelley Mockler, and Krista Kohl. Around 70-80 percent of individuals diagnosed with facioscapulohumeral muscular dystrophy report that pain is a significant part of their condition. There has been relatively little research or discussion in the medical literature about the... Read More »
Saturday, April 23 2022 11:00am ET | 10:00am CT | 9:00am MT | 8:00am PT Please join us as we watch the webinar recording featuring Eva Chin, the Executive Director for Solve FSHD - a recently formed Canadian company that is focused on accelerating the development of treatments for FSHD. We will follow the viewing... Read More »
April 23, 2022 11:00am Central Time 3247 47th Street S Fargo, ND 58104 Please join us for our first in-person gathering of the year! It’s been such a long time since we’ve been able to gather as a chapter. Join us for a chance to reconnect with each other, talk about our goals for the... Read More »
Minnesota In-Person Chapter Meeting Sunday, April 24, 2022 12:00PM Central Time Please join us for our first in-person event since the chapter launch! In this meeting we will discuss where we've been, where we're at, and where we're going (2025). We can't wait to see you there! Jacob Wise, Minnesota Chapter Director
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Join us this month to share stories about activities you and your loved ones with FSHD once enjoyed but find increasingly difficult - or impossible - to continue. It's okay to mourn. How do we overcome such losses? Have you discovered... 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 »
Thursday, April 28th 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 »
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