Noah is an adventurous and resilient eight-year-old from Illinois, USA, and among the first children diagnosed with KIF1A Associated Neurological Disorder.
Read More
Jaybriel’s Superhero Story
Jaybriel is a KIF1A superhero from California, USA. His family says “he is our superhero because he has the power to bring out the best in people everyday.”
Read More
Abby’s Superhero Story
Abby is a loving and determined two-year-old from Missouri, USA, who was diagnosed with KIF1A Associated Neurological Disorder in January 2019.
Read More
Meet the New KIF1A.ORG
Today we relaunched our home at KIF1A.ORG. This new digital platform makes it easier for the global KIF1A community of families, researchers, clinicians, partners and supporters to advance our mission: Improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure. When KIF1A.ORG was established in 2017, there were fewer than…
Read More
Susannah’s Superhero Story
Susannah is a KIF1A superhero. Hometown: Harlem, New York Age: 8 years Baseball All-Star Rockstar sister Never, ever, ever quits
Read More
Lily’s Superhero Story
Lily is a KIF1A superhero. Hometown: Alexandria, KY Age: 5 years Loves baby dolls, strollers and her family Toughest yet sweetest girl in town
Read More
In Memory of Eleonora – When a Superhero Falls
When a Superhero Falls By Ricardinho Qvistlund, Eleonora’s father Originally published April 11, 2019 (Translated from Swedish) At this night two months ago, you started your way towards the end, the acute condition was too tough for your body and the doctor declared that nothing more was to be done. Mom & Dad took the hardest…
Read More
Ava’s Superhero Story
Updated April 2020 Meet Ava, an almost 5 year old superhero who is a strong willed and determined little girl who never gives up and always wears a smile. A Message from Ava’s Family: Ava is an almost 5-year-old gearing up for kindergarten this coming fall! At a pretty young age her parents noticed her…
Read More
Research Simplified with Pedro Guedes-Dias
Research Simplified with Pedro Guedes-Dias Pedro Guedes-Dias collaborated with KIF1A.ORG to explain the KIF1A research being led by him and others at Holzbaur Lab. Part of this research helps us understand why there is a great range in symptoms and severity among people affected by KIF1A-related disorders. In this edition of Research Simplified, we’ll take…
Read More
How I Became a Stubborn Optimist
By Kathryn Atchley Originally published at 7billionones.org on February 27, 2019 In January 2017, my now five year old son, Parker, was diagnosed with a mutation in his KIF1A gene. After two years of searching, my husband Tyler and I had one answer to so many questions. Why is Parker falling all the time? Why can’t…
Read More
Caitlin’s Superhero Story
Caitlin is a KIF1A superhero. Hometown: Northamptonshire, UK Age: 5 years Superhero filled with love and laughter
Read More