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Early-Onset Parent Roundtable – Youth voices

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Event Series Event Series: Early-Onset Parent Roundtable

Dec 19, 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

Carden Wyckoff

This month we will host a roundtable conversation with young adults with FSHD. They were diagnosed as children or teens and will share their personal journeys of going through adolescence and becoming young adults while navigating the challenges of living with FSHD. Dani Liptak is currently earning her certification in the Americans with Disabilities Act, which will enable her to consult to stakeholders about compliance with the ADA. Carden Wyckoff works at SalesForce and has been an advocacy leader and adventure traveler. Marisa Spain is a 27 -year-old who lives in Michigan and is an ADA Advocate for the state of Michigan. She has a master’s degree in biology.

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.

Dani Liptak in her Stronger than FSHD shirt
Dani Liptak

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