Looking Back, Moving Forward: 2026 FSHD Parents Roundtable

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1 月 20 @ 8:00 下午 - 9:00 下午

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Looking Back, Moving Forward: 2026 FSHD Parents Roundtable

8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT

Join us for the first FSHD Parents Roundtable of 2026 where we’ll take a look back at all we accomplished in 2025 and share what we’ll be carrying forward into 2026 to strengthen resources, support, and community impact. We will also present a short preview of exciting initiatives underway and highlight opportunities where parents can contribute their expertise and lived experiences in the months ahead.

Whether you’re newly connected or have been with us for years, we invite you to come listen, share, and help shape the year ahead. Your voice, insight, and participation are essential as we continue building a stronger and more informed FSHD community for our kids and families.

We hope you’ll join us!

NEW in 2026: In order to receive the Zoom link for Gathering Place meetings, you MUST REGISTER for the meeting you would like to attend. Use the button below to register for the upcoming meeting.

Join us for our monthly Parents’ 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 possible, and to advocate for more research and clinical trials for children. We will have plenty of time for parents to exchange ideas and ask/answer questions from other parents.

We’d love your thoughts and participation. Please join us and bring your ideas, questions, answers, and tips and tricks.

Ally Roets & Sam Ray
Parents’ Roundtable Directors

Learn more about the Parents’ Roundtable