Category: Superhero Stories

Austin is a 5 year old superhero from Alberta. His family shares that “he has an amazing smile that lights up the room and he flashes it every time he hears a familiar voice.”

“His smile is contagious and his baby blue eyes will make your heart melt!”

“He is our very special sunshine that brightens up every single day.”

“We pray and hope for a cure for KIF1A and just know it is ‘when’ not ‘if.’”

“We know that every single day counts and the sooner we find a treatment, the better it will be for Alyssa and all who are affected by KIF1A.”

Emily is a relentless KIF1A superhero from North Carolina. “She has a contagious smile and loves with her whole heart. She works very hard to stay strong while waiting for a treatment or cure for KIF1A.”

“She knows about her condition, and when she feels frustrated because of pain or because she’s unable to do something, she says ‘I hate KIF1A!’ However, she has discovered a lot of friends ‘just like her’ through this community…”

James is a 22-year-old KIF1A superhero. His mom shares, “Treatment is so important because it can impact his quality of life as well as life itself for James and those impacted with this horrible disorder.”

A special, heartfelt message from Eleonora’s parents about their beloved superhero.

“The day he got his KIF1A diagnosis was the day I stopped thinking ‘I just want him to get to live a normal life’ and I started thinking ‘I just want him to live.’”

“Gino had been diagnosed with multitude of things in the past, and we were skeptical. We went through the stages of grief when we got Gino’s diagnosis. The focus became, how can we help him live a fulfilled life?”