Hello Friends

Welcome to our newest initiative of 2021! We are gearing up for major success this year that is both mission-focused and community-driven. Our pathway to treatment is the compass leading the way. Join us each month as we spotlight our monthly momentum and impact!

Our monthly highlights include research and community updates as well as goal progress, monthly announcements, and important KIF1A news. Check it out each month!

Research Highlights


Community Highlights

Social Media Posts

While it’s true that our KIF1A superheroes are relentlessness and heroic, many moments are raw, emotional, and challenging. Families don’t often have a platform to highlight daily KAND life. Each Sunday, we will now feature #ThisIsKIF1A for sharing stories of real battles experienced by our friends living with KAND. If you have a story to share, send an email to Charlotte@KIF1A.ORG.

Coping Box Project Update

Living with KAND is HARD, but thanks to a grant-funded opportunity awarded to our friends at Ryan’s Case for Smiles through Phillies Charities, Inc., KIF1A superheroes have extra support and comfort the next time they face a medical procedure, surgery, or an injury. So far, we have been able to supply 10 families with this amazing gift. Read more about this meaningful partnership here.

Family Support Tools

We continue to enhance available resources to newly diagnosed and current KIF1A families. Soon to come:

  • Frequently Asked Questions: Find out answers to the most common questions asked about KIF1A gene variance, treatment, and more!
  • Directory of Recommended Providers: A list of specialists hand-picked just for you by the KIF1A community.

Rare Disease Day

Mark your calendars! Rare Disease day is February 28th. Learn more about this worldwide event at rarediseaseday.org. KIF1A.ORG’s awareness effort for Rare Disease Day will be announced soon… stay tuned!

In Loving Memory

Our community has been shattered in grief by the loss of two more young KIF1A warriors. We will honor their memory every single day in our relentless pursuit of finding a cure. We must work faster.


Whatever role you play in our community, we need you. Thank you for all that you do to help us realize our mission for KIF1A superheroes everywhere.

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