The KIF1A team powers our mission and vision with tremendous impact and urgency. We couldn’t accomplish anything without their energy, heart and dedication to our KIF1A community.
Meet the people behind KIF1A.ORG.
Founder & Board Chair
Luke Rosen and Sally Jackson founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. In 2017 Luke left his career as an actor and writer to accelerate discovery of treatment for Susannah and children like her.
Luke has extensive experience in rare disease advocacy, research initiatives and policy. His mission is to accelerate biotech innovation and forge efficient collaborations within the scientific and patient communities resulting in treatment for KIF1A Associated Neurological Disorder.
With a focus on research strategy and outcome measures, Luke relentlessly works to educate and empower families affected by rare genetic diseases. By making sure every family plays an active role in discovery, from pre-clinical research through clinical trial readiness, Luke helps drive our mission to find therapeutic options for children living with KIF1A Associated Neurological Disorder.
Kathryn joined KIF1A.ORG shortly after her son Parker received his KIF1A diagnosis in January 2017. Before joining KIF1A.ORG, Kathryn spent six years at the headquarters of an international not-for-profit organization, working with both development and program areas. Her experience includes a wide range of nonprofit responsibilities, including grant writing, impact analysis, communications, budgeting, volunteer training, event planning and website management, all of which has been put to use at KIF1A.ORG.
As President of KIF1A.ORG, Kathryn’s focus is to advance our mission and continue to cultivate an engaged, global community of KIF1A families, researchers, clinicians, partners and supporters.
Dr. Dominique Lessard
Science Communication Director
Effective April 1, 2020
Dominique first started working with KIF1A.ORG in 2018 as a member of the Berger Lab at the University of Vermont. In graduate school, Dominique’s research focused on understanding the basics of KIF1A regulation and transport at the molecular level. On top of her KIF1A research background, Dominique brings experience in science communication and engagement techniques. Specifically, her training has focused on translating and conveying complex scientific rhetoric using mixed media formats.
Upon completion of her Ph.D., Dominique joined the KIF1A.ORG Leadership Team, effective April 2020. As Science Communication Director, Dominique drives KIF1A.ORG’s efforts to build a global, collaborative research network, and leads our research engagement and science communication strategy.
Shannon Scott, DNP
Chief Patient Officer
Shannon has been with KIF1A.ORG since May 2017. As a practicing pediatric health care provider and mother to Sadie, who was diagnosed with KIF1A Associated Neurological Disorder, she is uniquely positioned to serve our organization. Shannon’s education and experience in the medical field has provided her with opportunities to serve as an advocate, mentor and educator.
As Chief Patient Officer, Shannon supports collaboration with researchers who are studying KAND and helps caregivers improve their knowledge of the disorder. Her ultimate goal is to strengthen engagement and understanding between KIF1A families, researchers and clinicians to improve care and treatment options for KAND patients.
John Siemer, CPA
John joined KIF1A.ORG in September 2018 after his daughter Lily was diagnosed with KIF1A Associated Neurological Disorder. John’s background in finance brings great value to our organization. He has a broad range of accounting and tax experience, working with organizations of various sizes and entity types, across numerous industries and the non-profit sector. His nonprofit experience includes governmental audits and Form 990 tax preparation.
In addition to serving as Treasurer, John contributes to KIF1A.ORG development and advocacy efforts, and provides guidance to families doing local fundraisers to support KIF1A.ORG.