Having a child diagnosed with a complex, serious disease that causes disabilities is a very hard reality for parents to deal with, let alone for the child who faces it day in and day out. Our daughter, who was diagnosed at the age of 6, is mobile, but she walks more slowly than her peers, barely runs, and has a noticeable sway back. As she grew up (she is now almost 9) we noticed that kids stared out of curiosity. As much as she has an intellectual grasp of her disease, it is hard for her to truly give kids an explanation they can digest.
I was casually talking to one of the FSHD team members at Fulcrum Therapeutics (a biopharma working on FSHD therapies) about our daughter’s situation. They instantly jumped at the chance to come in and educate the kids on muscle diseases. They included Kate as part of their presentation. The Fulcrum Team and Lexi Papas, (an amazing filmmaker who has FSHD herself) set out to create an educational presentation and video that FSHD-affected families could use in school and camps to bring a deeper understanding to the disease. After all, education can bring down bias and open up conversation.
The result – a huge success! After the presentation, Kate was approached by kids she had never talked to before. They asked her thoughtful questions. Classmates congratulated her and told her how proud and how brave she is. She does not have to explain her condition over and over. This presentation proved to us that educating the community takes down the bias wall. It allows people to just see Kate for who she is, not for her differences.
I can’t thank the Fulcrum Team and Lexi enough for their support not only in producing this education video for us and the FSHD community but also for working so hard at finding a solution. As a community, we are so lucky to have them behind us. An amazing smart team with a human touch!