Early-Onset Parent Roundtable: Pediatric Updates from Dr. Jeffrey Statland

20:00 PM ET | 19:00 PM CT | 18:00 PM MT | 17:00 PM PT

Join us for a conversation with Jeffrey Statland, Professor of Neurology at University of Kansas Medical Center in Kansas City, Kansas. He is the co-director of the FSHD Clinical Trial Research Network (CTRN) and his specific research interest over the last 10 years has been preparing for clinical trials in FSHD. He has worked with collaborators to develop new disease-relevant outcome measures to assess patient-reported disease burden, functional impairment, and physiological changes in muscle.

Dr. Statland will join us to talk about the latest developments in trials and treatments for pediatric FSHD and give us information from the first ever pediatric-focused session at the World FSHD Alliance in Milan, Italy. This meeting will be packed full of the latest pediatric news and will give you a chance to ask questions of one of the leaders in the FSHD medical/research community.

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.

Nous aimerions connaître votre avis et votre participation. N'hésitez pas à nous rejoindre et à nous faire part de vos idées, de vos questions, de vos réponses, de vos conseils et de vos astuces.

• 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
Directeurs de sections à début précoce

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