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.

Support Our Mission

Newly Diagnosed?

Treatment Accelerator Program

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

We did it!

Learn More About TAP

Upcoming Events

  • Oct 16

    KIF1A.ORG Dylan Verden Office Hours

    These office hours provide an opportunity for you to bring any questions and discuss them in an open, informal setting. We encourage you to join…

    Wednesday, October 16, 2024 2:00 pm – 3:00 pm https://us06web.zoom.us/j/82677389706
  • 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,…

    Wednesday, October 23, 2024 1:00 pm – 2:30 pm 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  Million raised to advance our mission
0 + countries represented
See Our Impact

On the Blog

September Monthly Momentum
Monthly Momentum

September Monthly Momentum

September was packed with informational meetings, grant submissions, global connections with scientists, impact reports, awards, and outstanding community fundraising achievements! Keep reading to discover these amazing milestones and learn how you can get involved to make an IMPACT too! UPCOMING MEETINGS *Times are Eastern Time Zone. MCRI Impact Report In 2020, we provided MCRI and…

Read More
August Monthly Momentum
Monthly Momentum

August Monthly Momentum

Hello, amazing KAND Community! I know I might sound like a broken record, but we have SO MUCH exciting news and information to share this month! Here’s a sneak peek at what’s in store: Let’s dive in and explore all these wonderful updates together! UPCOMING MEETINGS *Times are Eastern Time Zone. ASO therapy: Positive Clinical…

Read More