is a patient-led nonprofit organization. Our two primary objectives are:

1) To connect families, physicians and caretakers of children diagnosed with KIF1A

2) To fund and accelerate research leading to a cure


  • KIF1A genetic mutations cause a progressive and neurodegenerative syndrome. The condition does not have a specific name and is referred to as "KIF1A-related disorder."

  • Doctors and families have to work together quickly in order to help children with mutations in KIF1A.

  • Our goal is to connect families, physicians and caretakers committed to discovering treatment for children living with KIF1A-related disorder. To find other families affected by KIF1A fill out the form below and somebody will reply within 24 hours.  



KIF1A Facebook Support Group
KIF1A Facebook Support Group

Connecting Families