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

  • Nov 7

    KIF1A.ORG Dylan Verden Office Hours – Bladder/GI Symptoms

    Join Dylan Verden for open office hours dedicated to discussing experiences, challenges, and questions related to KAND. We welcome any questions or topics, but are…

    Thursday, November 7, 2024 2:00 pm – 3:00 pm https://us06web.zoom.us/j/83677812340
  • Nov 20

    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, November 20, 2024 1:00 pm – 2:30 pm Online via Zoom
  • Jul 22 – 24

    KOALA Study prior to KAND Conference

    The KOALA study will be available to an estimated 40 KAND patients in the days leading up to the conference, on July 22, 23, and…

    Tuesday, July 22, 2025 – Thursday, July 24, 2025 In-person
    Boston, Massachusetts, USA
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

October Monthly Momentum
Monthly Momentum

October Monthly Momentum

Welcome to this month’s edition of the KIF1A.ORG newsletter! We have some exciting news to share with you so read on and stay informed! SAVE the DATE! 2025 KAND Family & Scientific Engagement Conference We’re excited to announce the official dates for our 2025 KAND Conference! Mark your calendars for July 25-26, 2025, and plan…

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Ale’s Superhero Story
Superhero Stories

Ale’s Superhero Story

“We dream of being able to find in Italy the knowledge and trials that are available in the USA today. For this reason we decided to fund a KIF1A association also in Italy, in collaboration with other Italian parents.”

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