In Memory of Eleonora – When a Superhero Falls

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
Research Simplified with Pedro Guedes-Dias

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

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
Research Simplified with Dominique Lessard

Research Simplified with Dominique Lessard

Research Simplified with Dominique Lessard Dominique Lessard collaborated with KIF1A.ORG to explain the KIF1A research being led by her and others at Berger Lab. Through this research we learn what distinguishes the KIF1A motor protein as one of the most effective at cargo transport. In this edition of Research Simplified, we’ll take Dominique’s research paper,…

Read More

Pause

By Sally Jackson Originally published April 17, 2018 I was recently asked if I was confident that a cure for KIF1A would be found – and the way in which I was asked was very nearly a rhetorical question; “And you believe that a cure will be found, yes?” My answer, though, was not automatic….

Read More