About Us

 In August 2016, our two-year old daughter, Susannah, was diagnosed with a rare, neurodegenerative disease called KIF1A-Related Disorder. There is no cure or treatment for this condition. Yet. The lack of information and resources available to KIF1A families left us desperate to find treatment for Susannah.

The progressive course of this disease makes time our biggest enemy in the race to cure KIF1A. Gene therapy and drug development are within reach, but there are two things preventing us from finding that cure: time and money. Recognizing the urgency and lack of medical research, we started a foundation, KIF1A.ORG.

Our growing group of KIF1A families is raising funds to accelerate research and discover treatment for every child living with this rare disease. 100% of funds raised benefit KIF1A research. Click here to make a difference by donating now.

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


Our goal is to swiftly connect families and support relentless research leading to treatment for KIF1A​.


Mutations in the KIF1A gene cause a degenerative neurological condition with a progressive course. ​Often these mutations occur spontaneously and are non-inherited genetic changes, making the disease difficult to diagnose. Fewer than 100 children throughout the world are known in literature to be diagnosed with KIF1A.

Our mission is to immediately discover a cure for every child living with KIF1A. The only way to accomplish that goal is to connect families and raise money. We need your help.