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Meet the New KIF1A.ORG
From KIF1A.ORG

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…

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In Memory of Eleonora – When a Superhero Falls
Superhero Stories

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…

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Research Simplified with Pedro Guedes-Dias
Research Simplified

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…

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How I Became a Stubborn Optimist
Living with KAND

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…

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