An experienced non-profit leader and author is appointed to the first-ever professional staff role for the foundation.


Summary: The Kleine-Levin Syndrome (KLS) Foundation has appointed Jason Fisher, an experienced non-profit leader and government policy advisor known for his work in rare disease advocacy, as its first executive director. He has personal experience as a parent to a child with a rare chromosomal abnormality. Fisher previously served in a similar role at The Chromosome 18 Registry & Research Society and is the author of an award-winning memoir. 

Key Takeaways:

  • First Executive Director Appointed: The KLS Foundation has appointed its first executive director, Jason Fisher, who brings experience in non-profit leadership and rare disease advocacy.
  • Personal and Professional Expertise: The new executive director’s personal experience with a rare chromosomal abnormality in his family has driven his commitment to rare disease patients.
  • Strategic Leadership and Advocacy: The KLS Foundation Board of Directors expects the new executive director to infuse the foundation with renewed energy and strategic focus on building awareness, supporting the KLS community, and advancing medical research.

The Kleine-Levin Syndrome (KLF) Foundation announced the appointment of Jason Fisher as its first executive director.

Fisher is an experienced non-profit leader and government policy advisor. His personal experience as a parent to a child with a rare chromosomal abnormality “has made him a skilled and compassionate advocate for rare disease patients and their families,” according to a release from the KLS Foundation. 

Jason Fisher was named the KLS Foundation’s first executive director. Photo credit: KLS Foundation

Experienced Leader with a Personal Connection

Fisher previously served as the executive director of The Chromosome 18 Registry & Research Society, an advocacy organization that serves individuals and families affected by chromosome 18 abnormalities. Fisher’s award-winning memoir, “To Where You Are,” was published in 2022.

“Jason is a talented and thoughtful communicator, fundraiser, and leader. We deeply respect his work in rare disease advocacy and know he will bring the same compassion and impactful strategy to help grow the KLS Foundation,” says KLS Foundation president Steve Maier, who experienced 18 KLS episodes from age 13-27, in a release. “The KLS Foundation board of directors will work with Jason to bring renewed energy and dedication to the foundation’s mission: to build awareness of KLS, support our community of KLS patients and caregivers, and drive medical research for a cause and a cure.”

Fisher says in a release, “I’m honored to be the first executive director of the Kleine-Levin Syndrome Foundation. Rare disease advocacy and advancing medical research is both extremely personal to me and also a professional passion. To be chosen for such an integral role within the Foundation is humbling and I look forward to working collaboratively with stakeholders to achieve our shared objective of finding a cure for KLS.”

The Kleine-Levin Syndrome Foundation is a non-profit patient advocacy organization that is an educational hub for doctors and clinicians, an incubator for research to find a cause and treatments for KLS, and a home for patient and caregiver support.

Photo 84287817 © Jakub Jirsak | Dreamstime.com