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Early-Onset Parent Roundtable – Pediatric Updates from Our Parent Group

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Event Series Event Series: Early-Onset Parent Roundtable

Aug 15, 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

Many of you have asked us to periodically update you on the advocacy initiatives the Early-Onset Chapter has been working on, so we set aside our August meeting to update the parents on the ongoing process in getting pediatrics included in studies and clinical trials. This work is vitally important to ensure future treatments are available to the pediatric population. We also are advocating for inclusion of the non-ambulatory population in clinical trials and treatments.

Please join us for a conversation with Ally Roets, Kristin Zwickaw, and Debbie Eggleston who have been working tirelessly with the leaders in research and industry to ensure pediatrics with FSHD are not forgotten.

This meeting will give you a chance to meet other parents of children with FSHD and to get involved in bringing treatments to our kids.

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