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.

Treatment Accelerator Program Fundraising Update

Please be a hero to our superheroes and donate to our TAP fundraiser so we can test promising therapeutics for KAND!


Visit our TAP webpage for more details and follow along as we reach out goal of $70,000!


Our Superheroes

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

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 Impact

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On the Blog

Sloane’s 1st ASO treatment

Sloane’s 1st ASO treatment

Megan, Sloane’s mother, shared their experience in a phone conversation with Angie Fuller, Director at KIF1A.ORG. Sloane received her first ASO dose on May 9, 2024, marking a milestone that has been years in the making. Both she and her family were filled with excitement and nerves on this significant day. They hope to see…

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Beau the Superhero!

Beau the Superhero!

Watch the news interview here: FRESNO, Calif. (KFSN) — A little superhero got some big recognition. The Corcoran Police Department stepped up to celebrate a brave boy battling a rare disease. Meet two-year-old Beau. He’s a fun, energetic boy who is an inspiration to everyone around him. Beau is living with KIF1A, a neurological disorder…

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