Every year we celebrate KIF1A Day on April 28th.

If you are new to our community, it’s important to know that April 28th is also Superhero Day! This day perfectly captures the unique and relentless spirit of our KAND patients who don their superhero caps every morning, put on a brave face, and fight for their lives. It’s a perfect day (and week!) to celebrate our strong, courageous, and fearless superheroes!

This year, we are honoring our warriors and superheroes by raising money to help them travel to New York City and participate in the KOALA research study conducted by Columbia University Medical Center. Participating in this research study is extremely important for our community collectively and for each warrior individually. But traveling is expensive and prohibits many of our warriors from participating in this crucial research.

Our goal is to raise money to help more superheroes participate in the KOALA research study during the 2023 KAND Family & Scientific Engagement Conference in August. Please read below for more details on how to donate and how you can help share our fundraiser through your own social media posts and personal network.


Thank you! We raised $22,731 to help our KAND families!

We appreciate everyone’s support and generosity! We couldn’t have done it without YOU!

If you missed the fundraiser, don’t worry! You can always donate on our website!