Team

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.

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

Alejandro Doval, and Maribel Saez are the Founders and Executive Directors of KIF1A.ES, Spain. Alejandro and Maribel are relentless in their passion to strengthen research initiatives, and develop our growing KAND community in Spain. They are key members of the KIF1A.ORG leadership team, and most important, parents to the mighty Mario. Visit the Spain website here: www.kif1a.es.

Rickard is the father to our beloved Eleonora, one of the first children diagnosed with KAND. Rickard and his family are fierce advocates and educators for KAND families and help strengthen our growing global community.

After an engaging and enlightening summer 2021 internship with KIF1A.ORG, Michelle has officially joined KIF1A.ORG’s team as the Therapeutic Development Associate, where she will help the team accelerate treatment for KAND. Michelle is a current student in the MA in Biotechnology program at Columbia University. She graduated 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 joined KIF1A.ORG in 2023. Angie lives in Boise, Idaho with her husband and two kids. She is mother to Weston (10), who was diagnosed with KAND in 2020.

As Interim Director, Angie’s role is to communicate information from the KIF1A.ORG team to our growing community, support existing initiatives, work with the 2023 KAND Conference planning team, and more as her role evolves.

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.