​We are thankful to The Discover Program for Undiagnosed Diseases at Columbia University for dedicating time and resources to meet families of children with KIF1A. Their dedicated work continues to help every child diagnosed with KIF1A.​
Data on this site was collected by Lia Boyle and presented to KIF1A families on April 14, 2017 at a family meeting led by Clinical Geneticist, Wendy Chung, MD, PhD. The presentation took place at Columbia University Medical Center. Available data has changed since April, 2017 as more families make contact and KIF1A becomes recognized as a very relevant rare disease requiring urgent scientific attention.