KIF1A.ORG encourages collaborative initiatives to advance KIF1A research and accelerate therapeutic development. At the core of our collaborative research network is Dr. Wendy Chung and her team in the Chung Lab at Columbia University Medical Center. Chung Lab leads a comprehensive KIF1A research program focused on urgently discovering treatment for individuals affected by KIF1A Associated Neurological Disorder (KAND). The dedicated researchers and physicians at Columbia University Medical Center collaborate with members of the scientific community to bring us closer to treatment and a cure for KAND.




Wendy Chung, M.D., Ph.D., is an ABMG board certified clinical and molecular geneticist with 20 years of experience in human genetic research of monogenic and complex traits. She has extensive experience mapping and cloning genes in humans, and describing the clinical characteristics and natural history of novel genetic conditions and characterizing the spectrum of disease, and developing tailored care and treatments for rare genetic diseases. She received her B.A. in biochemistry and economics from Cornell University, her M.D. from Cornell University Medical College, and her Ph.D. from The Rockefeller University in genetics. View Dr. Wendy Chung’s full profileView profiles of the Chung Lab team members.


Lia Boyle is an MD/PhD candidate at Columbia University College of Physicians & Surgeons. Prior to starting medical school, she worked as a research and clinic coordinator at the Kennedy Krieger Institute in Baltimore, MD, focusing on rare genetic disorders. It was through her experiences at the clinic that she became dedicated to a career serving individuals with rare genetic conditions and their families.


Cathleen (Cat) Lutz, Ph.D., M.B.A., is Director of the Mouse Repository and the Rare and Orphan Disease Center at The Jackson Laboratory. She has fiscal and managerial oversight of a growing collection of more than 8,500 unique strains, including over 1,700 live colonies for distribution to the scientific community. As part of the Mouse Repository program, Dr. Lutz is the Principal Investigator on a number of NIH-sponsored resource grants, including the Mutant Mouse Regional and Research Center at JAX. Dr. Lutz also serves as the Director of In Vivo Pharmacology and Efficacy Testing Program in Bar Harbor, which interfaces with biotechnology and pharmaceutical companies to pursue novel therapeutics across a variety of therapeutic areas. View Dr. Cat Lutz’s full profile.


In addition to our core research team, KIF1A.ORG fosters patient-driven collaboration with a growing network of researchers dedicated to KIF1A and related disease areas.

Together, we can harness existing science and make every research initiative powered for patients. Our foundation-driven initiative has identified research programs working on KIF1A and similar motor proteins. Just like our disease, KIF1A research is not as rare as we think.

The problem is, we find out about this work too late. Our call to action is for members of the scientific community working on KIF1A to contact us early. Your work matters.

Join our growing network of researchers working to make a translational impact on KAND families. Together we will discover treatments for this generation.

If you are researching KIF1A or related disease areas, we want to hear from you. Together we can accelerate discovery of treatment.