To immediately support KIF1A research efforts please send an email to:

KIF1A Research

  • Our mission is to save the life of every child affected by KIF1A Disorder. The only way to discover treatment is to immediately accelerate research by convening the world's leading researchers in childhood genetic and neurodegenerative disorders. This scientific collaboration will lead to discovery of treatments and increase the quality of life of those affected by KIF1A. We cannot afford to wait. Our window of opportunity to save children living with this degenerative syndrome is closing. It is urgent that we raise funds to promote relentless research. By funding KIF1A research right now, every child with KIF1A Disorder has a chance.

  • Since the first diagnosis in 2011, there has never been a study aimed at therapeutic strategies for children born with variants in KIF1A. With guidance from our Medical Advisory Board, our organization supports research in all neurodegenerative diseases by encouraging open data sharing and connecting families caring for children with mutations in the KIF1A gene.

Whole Exome Sequencing

  • Whole Exome Sequencing is a genetic test allowing physicians to diagnose rare genetic anomalies, including KIF1A. works to assist families unable to afford this test. If every family has access to Whole Exome Sequencing, the KIF1A patient sample size will grow. Identifying undiagnosed children with mutations in KIF1A will accelerate immediate therapeutic discovery.

  • There are 7000 known types of rare diseases, 80% of which are caused by genetic mutations. Access to Whole Exome Sequencing is the first step in curing children with rare and untreatable diseases, like KIF1A. With your support we will make sure every child has access to this vital genetic test. ​


Support KIF1A

Donations can also be mailed to:


616 West 137th Street, 3A

New York, NY 10031


is a non-profit 501(c)(3) corporation. ​​​​All donations are tax deductible.
EIN: 82-0714729​​​