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Early-Onset Parent Roundtable – Pediatric FSHD Summit

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Event Series Event Series: Early-Onset Parent Roundtable

Oct 17, 2023 @ 7:00 pm - 8:00 pm

Early-Onset Parents Roundtable

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

The end of September saw the first-ever workshop focused solely on pediatric FSHD. The workshop, sponsored by Solve FSHD, discussed knowledge gaps in the understanding of FSHD in children and teens, trial readiness for pediatric trials, and strategies for ensuring that no part of the FSHD community–early-onset individuals, nonambulatory, etc.–are left behind. The parents who organized this summit will be sharing the outcomes of this landmark meeting and discussing what needs to happen next.

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 possible. 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.

  • Once you join the group by submitting your RSVP for a meeting, you will not need to register for each month’s meeting. You will automatically receive monthly reminders and call-in/Zoom information. If you participated in one of our meetings in 2022, you are automatically a part of the group and do not need to register again. You may change your group membership at any time by emailing us at info@fshdsociety.org

Ally Roets & Sam Ray
Early-Onset Chapter Directors

Learn more about the Early-Onset FSHD Chapter: FSHDSociety.org/Early-onset-chapter