KIF1A.ORG exists to improve the quality of life of families affected by KIF1A Associated Neurological Disorder (KAND), and to relentlessly drive research initiatives leading to a cure. KAND is a rare and degenerative genetic disease. As a patient-focused foundation spearheaded by parents of children with KAND, we’re here to connect and support every family affected by this disorder.
Our mission is to drive research for a cure and work to improve the lives of those affected by KAND until we get there.
In August 2016, our founder’s two-year-old daughter, Susannah, was diagnosed with a rare, neurodegenerative disease called KIF1A Associated Neurological Disorder (KAND). There is no cure or treatment for this condition. Yet. The lack of information and resources available to KAND families drove us to start KIF1A.ORG. Since then, our community has grown exponentially and we continue to support research leading to a cure. Learn more about our history.
We are proud of our impact. Since 2016, the scientific community has a greater understanding of KIF1A and the genetic mutations causing this devastating disease. We support a robust pre-clinical program bringing us closer to treatment every day. There is a rapid increase in diagnosis due to available genetic testing, and newly diagnosed families find our community every week.
KIF1A.ORG is a community of remarkable families working to eliminate the challenges of rare disease and to urgently find a cure for KAND.
With approximately 200 known cases of KAND across 20 countries, our community is centered around a tight-knit group of families. We work with researchers, medical professionals and partner organizations to move toward our mission and vision of a cure for KIF1A Associated Neurological Disorder.
We have a dedicated group of staff and volunteers working to make a difference for our families. Meet the team!