Скачать или смотреть Advocating for Pediatric FSHD research and clinical trials

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.

We present a conversation with Ally Roets, Kristin Zwickau, and Debbie Eggleston who have been working tirelessly with the leaders in research and industry to ensure pediatrics with FSHD are not forgotten.

The Early-Onset FSHD Chapter is led by parents who know the challenges of parenting a child with FSH Muscular Dystrophy. This group was formed by parents, for parents and families, to offer support, compassion, and guidance. Our aim is to connect families, deepen community, and support FSHD families wherever they are.

https://www.fshdsociety.org/early-ons...

Monthly Early-Onset Parents Roundtable
Every 3rd Tuesday | 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM
Where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD remain as healthy and mobile as possible.

Visit The Gathering Place on our website, where you can find a variety of online communities that fit your needs and life stage: https://www.fshdsociety.org/gathering...