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May 21 @ 8:00 pm - 9:00 pm
Event Series
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8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT
CHANGE NOTICE: Instead of recapping Hill Day, we welcome our esteemed guest, Heloise Hoffmann.
Our guest is Heloise Hoffmann, who will share insights about coping with the diagnosis of FSHD based on her personal journey from age 13, when she learned the cause of her mysterious symptoms. Now a sophomore at Stanford University, her path has not been easy. She shares insights from her life experiences with candor and insight. This promises to be an invaluable session for teenagers with FSHD as well as their parents. Heloise notes, “I am leading a research team of undergrads right now on developing a novel treatment for FSHD. I was thinking it might be a great opportunity for the parents/kids to hear the team talk about our research and experiences!” She’s an incredible young leader in our community and you won’t want to miss the opportunity to chat with her.
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.
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 2023, 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 Chapter
