Please join us for the December Early-Onset Parent Roundtable, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. This month Ally will provide information to parents about the MOVE study and participating sites, and pass along some information about parent participation in helping gather data from pediatric physical therapy records to facilitate FSHD early-onset trials and treatments. The FSHD Society is also working on a few more projects to get the early-onset patients in front of researchers. We will have plenty of time for parents to exchange ideas and ask/answer questions from other parents.
This meeting will offer us an opportunity to discuss and brainstorm plans for 2022 and our regular monthly Early-Onset Parent Roundtable – scheduled for the 3rd Tuesday of every month at 8pm Eastern. We will use the December meeting to set the topics for the first few meetings of 2022 so we can line up speakers/moderators for each topic. We’d love your thoughts and participation.
Please join us and bring your ideas, questions, answers, and tips and tricks.
~Ally Roets, Early-Onset Chapter Director