Our staff powers our mission and vision in some pretty amazing ways. 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. Luke has extensive experience in rare disease stakeholder engagement, advocacy and research initiatives. Recognized by Global Genes as a 2018 RARE Champion of Hope Honoree, Luke often speaks at international events about innovation in therapeutic development and community engagement. His mission is to accelerate biotech innovation and forge efficient collaborations within the scientific and patient communities, resulting in discovery of treatment for children like Susannah.
With a focus on developing efficient and meaningful outcome measures, Luke relentlessly works to educate and empower families affected by rare genetic diseases. Every KIF1A family plays an active role in discovery, from pre-clinical research through clinical trial readiness and regulatory approval.
In addition to his role as Founder of KIF1A.ORG, Luke serves as the Vice President of Patient Engagement and Government Affairs at Ovid Therapeutics, a biotech working on rare, neurological disorders.
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.
Shannon Scott, DNP
Chief Science 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 Science 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.