Kleine-Levin Syndrome Foundation Welcomes Executive Director

Experienced non-profit leader and author Jason Fisher appointed to first-ever professional staff role for the Foundation

SAN JOSE, Calif., May 30, 2024 /PRNewswire/ -- The Kleine-Levin Syndrome Foundation today announced the appointment of Jason Fisher as its first executive director.

Jason 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. Jason 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. Jason'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," said Kleine-Levin Syndrome Foundation President Steve Maier, who experienced 18 KLS episodes from age 13-27. "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."

"Jason's professional and personal accomplishments will help the KLS Foundation achieve even greater impact," said KLS Foundation Vice President Dani Farber, who experienced 17 KLS episodes from ages 15-24. "We're proud to welcome him aboard and look forward to introducing him to the KLS community."

"I'm honored to be the first executive director of the Kleine-Levin Syndrome Foundation," said Jason. "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. Support clinical research and learn how the KLS Foundation supports our community at www.klsfoundation.org.

Media Contact: 
Genevieve Rozansky
[email protected] 

SOURCE Kleine-Levin Syndrome Foundation