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

  • 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
  • Feb 1 – 28

    Miles that Matter for KIF1A 2026

    Our Miles that Matter fundraiser is BACK in 2026!! Race Info Will You Join Us for Miles That Matter for KIF1A? This February, we’re challenging…

    Sunday, February 1, 2026 – Saturday, February 28, 2026 Participate from anywhere in the world!
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

November Monthly Momentum
Monthly Momentum

November Monthly Momentum

Updates from KIF1A.ORG November 2025 is almost done and we have a lot to be thankful for, as always! Read on below to learn more about what’s been happening at KIF1A.ORG: Coming in 2026: KIF1A Center of Excellence! 🗣️ We are beyond thrilled to share the news that Boston Children’s Hospital will launch a KIF1A…

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Open Position: Part-Time Fundraising Coordinator
From KIF1A.ORG

Open Position: Part-Time Fundraising Coordinator

Location: Remote; United States Organization: KIF1A.ORG Reports to: Executive Director Employment Status: Part-time, non-exempt About KIF1A.ORG KIF1A.ORG is a patient-led nonprofit organization dedicated to accelerating research and treatment development for KIF1A-Associated Neurological Disorder (KAND), an ultra-rare and progressive neurodegenerative condition. By fostering a global community of patients, families, scientists, and clinicians, KIF1A.ORG drives collaborative efforts…

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