KIF1A
KIF1A.ORG Kids

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.

2025 KAND Conference Presentations

Newly Diagnosed? Register with our organization.

2025 KAND Conference Presentations & slides are available!

Presentations & Slides

Upcoming Events

  • Oct 23

    Newly Diagnosed Meetup

    These gatherings are open to anyone that is new to our community or any KAND families interested in learning more about our organization’s mission, staff,…

    Thursday, October 23, 2025 12:30 pm – 2:00 pm Eastern Time Zone
    Online via Zoom
  • Nov 13

    4th Quarter Community Call, KIF1A.ORG

    Join us each quarter to dive into current community events, exciting research opportunities, scientific updates, and more! Your participation is essential, and we truly value…

    Thursday, November 13, 2025 12:30 pm – 2:00 pm Eastern Time Zone
    Online via Zoom
  • Dec 11

    Newly Diagnosed Meetup

    These gatherings are open to anyone that is new to our community or any KAND families interested in learning more about our organization’s mission, staff,…

    Thursday, December 11, 2025 12:30 pm – 2:00 pm Eastern Time Zone
    Online via Zoom
View All Upcoming Events ›

Our Superheroes

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

Sadie
Jaybriel
Susannah
Brayden
Lily
Ashley
Collier
Meet Our Superheroes

Featured in Ken Burns Documentary

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.

See Exclusive Clips

Our Impact

0 + people diagnosed with KAND
0 + Research Network Members
0 + countries represented
See Our Impact

On the Blog

September Monthly Momentum
Monthly Momentum

September Monthly Momentum

Updates from KIF1A.ORG While summer may be winding down in the Northern hemisphere, we are revving up to finish out 2025. Read on below to learn more about: KIF1A Virtual Hill Day – Advocacy Opportunity for KIF1A Community! We are seeking US-based volunteers interested in participating in a virtual “KIF1A hill day” during the week…

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August Monthly Momentum
Monthly Momentum

August Monthly Momentum

Updates from KIF1A.ORG July was an unforgettable month for the KIF1A.ORG community! We had an incredible time connecting, learning, and growing together at the 2025 KAND Family & Scientific Engagement Conference. Thank you to every family, researcher, clinician, and supporter who made this event such a success. If you couldn’t join us—or if you just…

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