Everly has a life debilitating genetic disorder called FRRS1L (pronounced Frizzle) that caused her to lose all her abilities at the age of two. She is cognitively present, sharp, and capable and demonstrates that by using an eye gaze communication device. Everly is trapped in a body she can’t control or move, preventing her from playing and engaging the world and people she loves. BUT that would all change with treatment that would bring Everly’s brain and body back to function. Research shows it will work, we just need to fund the one time treatment. Everly is doing this kids adaptive triathlon, alongside a support athlete, with hopes to share her story, raise funding to get treatment developed, and to show the world she is a fighter!

All donations are through Finding Hope for FRRS1L, the nonprofit started by Everly’s parents alongside two other Frizzle families. Finding Hope for FRRS1L is a 501c3 nonprofit registered in Colorado. All donations by US citizens are tax deductible. Finding Hope for FRRS1L has no paid staff and minimal overhead costs so that all donations go to funding treatment. To keep the treatment development process moving the nonprofit needs to raise $3 million by Dec. 2024 to fund the manufacturing of the actual drug to be given to cure Frizzle kids. Learn more about the specific steps we need to fund to get treatment produced for Everly and her Frizzle friends from around the world.