Organizations Filed Purposes:
A global community dedicated to improving the lives of those affected by KAND and accelerating research to find a cure
KIF1A.ORG is a parent-led organization established in 2017 to launch the world's first translational research program dedicated to discovering treatment for people affected by KIF1A Associated Neurological Disorder (KAND). We support a robust research program for KAND in the Chung Lab at Columbia University in New York City. Program elements include a global patient registry and longitudinal natural history study; disease modeling with patient-derived stem cell lines (iPSCs) and animal models; biomarker studies; KAND severity scale and clinical disease characterization. The Chung Lab's work has drastically improved our understanding of KIF1A gene function, clinical care, and targeted strategies to develop treatments and cures
KIF1A.ORG hosted the largest gathering of KIF1A families, researchers clinicians, and supporters at the KAND Family & Scientific Engagement Conference on August 16-17, 2019, at Columbia University in New York City. With over 200 attendees, the KAND Conference provided the most comprehensive and targeted research and clinical information for the KAND community to date. In order to reduce the financial burden on families traveling to the Conference, KIF1A.ORG provided $39,027 in travel stipends and local transportation services to support conference attendees. Through the KAND Conference, KIF1A.ORG empowered and activated KAND caregivers with the knowledge needed to effectively support a patient-centered research strategy in
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Kathryn Atchley | President | 40 | $8,750 |
| Shannon Scott | Chief Science Officer | 5 | $0 |
| John Siemer | Treasurer | 10 | $0 |
| Sally Jackson | Director | 5 | $0 |
| Luke Rosen | Board Chair | 20 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202043179349303754_public.xml