KIF1A.ORG is a global community dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder (KAND) and accelerating research to find a cure.

KIF1A.ORG Featured in Ken Burns Documentary: The Gene

The KIF1A.ORG community was recently featured in “The Gene: An Intimate History”, a film about how scientists, doctors and patients are unlocking the power of science to diagnose and treat genetic diseases. Now more than ever, our world is looking to pioneers and innovators to accelerate scientific breakthroughs that will improve and save lives. Part One of The Gene highlights the relentless KIF1A.ORG community and our mission to find a cure for KAND. Visit our webpage to see a few exclusive clips!

Our Superheroes

Meet some of our superheroes battling KIF1A Associated Neurological Disorder. They're the bravest people we know.

KAND Conference

KAND Family & Scientific Engagement Conference

KIF1A.ORG hosted the largest gathering of KIF1A families, researchers, clinicians and supporters at the KAND Family & Scientific Engagement Conference on August 16–17, 2019, at Columbia University in New York City.

We are dedicated to making the latest KIF1A research and data freely and easily accessible. Visit our conference page to watch the presentations and other conference materials.

Our Impact

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On the Blog

#ScienceSaturday: August 8, 2020

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community. This project is a collaboration between KIF1A.ORG’s Research Engagement Team Leader Alejandro Doval, President Kathryn Atchley and Science Communication Director Dr. Dominique Lessard. Send news suggestions to our team at impact@kif1a.org.

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How JAX Helped KIF1A Kids Get A Mouse

Published on August 15, 2017 Grace Niewijk recently interviewed me about the incredible scientists at The Jackson Laboratory and how they helped our KIF1A families. We talked about the campaign #WeNeedAMouse and our quest for mouse models so scientists can study KIF1A. Check out some of the mouse videos and even a song written just…

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