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.

Luke Rosen

Luke Rosen, MS

FounderLuke@kif1a.org

Luke Rosen and Sally Jackson founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. In 2017 Luke left his career in film and television to accelerate discovery of treatment for Susannah and children like her.

With a focus on research strategy and outcome measures, his mission is to accelerate biotech innovation and forge efficient collaborations to rapidly discover treatment for KIF1A Associated Neurological Disorder.

Luke helps drive our mission to urgently bring treatment to children living with KIF1A Associated Neurological Disorder.

Read More
Dr. Dylan Verden Headshot

Dylan Verden, Ph.D.

Chief Science OfficerDylan@kif1a.org

Dylan joined KIF1A.ORG in 2022 after completing his PhD in Neuroscience at the University of Colorado Medical Campus. Dylan’s research aimed to understand how different cell types in the brain support one another during development and neurodegeneration. In addition to his academic research, Dylan has built a career helping experts explain scientific information to community stakeholders, using intuitive language to enrich science education and policy.

As Chief Science Officer, Dylan acts as a liaison between KIF1A.ORG’s many stakeholders and our patient community. His goal is to bridge communication between KAND patients and academic, clinical, and industrial networks to facilitate empathy-driven and patient-centered research and clinical outcomes. Dylan’s passion is based in listening to community needs and finding common language that empowers informed decision-making.

michelle tao headshot

Michelle Tao

Director of StrategyMichelle@kif1a.org

After an engaging and enlightening summer 2021 internship with KIF1A.ORG, Michelle joined KIF1A.ORG’s team as the Therapeutic Development Associate, where she helped the team accelerate treatment for KAND. Since then, she has become an essential team member and leader within the organization and now serves in a volunteer role as KIF1A.ORG’s Director of Strategy.

Michelle has a MA in Biotechnology from Columbia University, and an undergraduate degree from NYU Stern with a B.S. in Business (concentrations in Finance and Global Business) and a minor in Genetics. Subsequently, she worked in healthcare banking for 5 years. Michelle is passionate about breaking down human-made barriers to treatment in order to ensure equitable access to care.

Angie Fuller, B.S.

Executive Director ​Angie@kif1a.org

Angie Fuller joined KIF1A.ORG in 2023. Angie’s background is in nursing, and lives in Boise Idaho with her husband and two sons. She is mother to Weston (11), who was diagnosed with KAND in 2020.

As Executive Director, Angie looks forward to supporting our growing community, working on existing initiatives, and building upon the successful networks and opportunities created since the organization was founded in 2017.

In her free time Angie enjoys outdoor adventures with her family, skiing in the winter, boating in the summer, and is currently learning to play pickleball! Most important, Angie is dedicated to every KAND family’s future and rolls up her sleeves to work hard for our relentless community.