Teens, Evie and Pano, are part of MOVE Peds, a crucial study to accelerate therapeutic developments for early-onset FSHD.
Their father, Tony, recounts their first visit to the lab:
When Evie and Pano, two kids living with FSHD, stepped into the Royal Children’s Hospital in Melbourne Australia to participate to the MOVE Study, a powerful moment unfolded. Under the guidance of Dr. Peter Howling and his dedicated team, we toured the lab, where their tiny blood samples taken from them were growing muscle cells that could unlock vital answers about FSHD.
Evie, with her quiet determination, and Pano, with his bright curiosity, saw firsthand how their participation is a beacon for scientists around the world. They understood, even at 13 and 15, that their courage and commitment are helping drive research forward. We are so grateful to be part of this, knowing that their small steps today may lead to huge strides tomorrow for the entire FSHD community.
Our thanks to Evie and Pano for their participation in research that could help so many others with FSHD! What legends!
To learn More about MovPeds, visit: https://clinicaltrials.gov/study/NCT06847282
To learn more about other FSHD clinical trials in Australia, visit: https://fshdglobal.org/activetrials
