About Us

​ is a resource for people affected by KIF1A - Related Disorder, a rare genetic disease caused by a mutation in the KIF1A gene. On this site you can find current literature and links to important organizations.

Our primary function is to accelerate research leading to clinical trials. We do this by funding programs actively working on KIF1A.


To immediately find a cure for every child living with KIF1A.​

​Welcome​​​​ is a patient-led organization started by parents dedicated to finding a cure for children living with KIF1A, a rare genetic disease. 


Our goal is to connect families and support the scientific community's relentless effort to cure KIF1A.


Mutations in KIF1A are extremely rare and cause a degenerative neurological condition with a progressive course.