Imagine being fully aware but unable to move or speak—this is daily life for 8-year-old Everly Green in Colorado, who’s battling an ultra-rare genetic disorder called FRRS1L. Her family, refusing to accept hopelessness, has teamed up with others worldwide to fundraise for a potential gene therapy after drug companies turned them away. Their grassroots effort has already sparked promising research, showing real progress in lab mice. It’s a powerful reminder of what families can achieve when the system fails them. How do you think communities can best support families facing rare diseases like this? #Health #BodyHealth #RareDisease