First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Warmer weather will soon be here!! Many in the WOW group have talked excitedly of travel plans. With travel comes a couple of high-level concerns for those of us with neuromuscular diseases. The challenges of... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Access to genetic testing for FSHD has long been a problem in our field. Many doctors find it challenging to order the test because it is complicated and offered by only a few laboratories. Patients and families face obstacles in finding... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Self-compassion is simply about treating ourselves in difficult times with the same kindness and compassion that we would treat a good friend who is struggling. We already know how to do this when it comes to other people. However, making... Read More »
Tuesday, May 10th 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 »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Get to know your fellow GenZers at this social gathering! This month, Russ Caratenuto, currently a medical student, will talk about his path into medicine, including some of his own research, and then explain some of the up and coming drug... Read More »
Tuesday, May 17th 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 »
Join Drs. Johanna Hamel, Kate Eichinger, and Natalie Katz to learn about the largest natural history ever done for FSH muscular dystrophy. People of all ages can participate, and children and teenagers are especially needed. Find out why this study is so important and why you and your affected family members' involvement will have a... Read More »
Thursday, May 26th 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 »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all CarePartners to join us this month for an open-ended conversation about what you most need in the way of information and community support and networking. Your input is vital in helping us develop our monthly meeting into a valuable... 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, one of our members, a wheelchair user, will share of her adventures and challenges during a month-long solo trip driving her van from the Upper Mid-west to Florida. This is our mutual support... Read More »
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