Narcolepsy Network, a national non-profit organization for people living with narcolepsy and idiopathic hypersomnia (IH), is pleased to announce the appointment of Liz Burgess as its new Executive Director.
Liz has dedicated her career to mission-driven leadership, serving for more than 20 years as an Executive Director of a diverse range of nonprofit organizations. Most recently, she led the revitalization of Bleeding Disorders Alliance Illinois. Her broad background in the rare disease community has given her a deep, sophisticated understanding of the unique challenges — from fiscal sustainability to pharmaceutical partnerships — to keep specialized patient advocacy groups thriving.
Beyond her professional accolades, Liz brings a profound personal empathy to the role. Having been diagnosed with epilepsy as an adult, she knows firsthand the isolation and uncertainty that often follow a life-altering diagnosis. She understands community support is life-changing.
“I know from my own journey that you don’t just join an organization like Narcolepsy Network for information — you join to find ‘your people’ and a community that truly understands your daily reality,” said Liz Burgess, Executive Director, Narcolepsy Network. “My immediate priority is to immerse myself in the Narcolepsy Network community and listen. I am looking forward to meeting our members and their families, hearing their stories, and ensuring they feel supported through every phase of their lives.”
Earlier this year, more than 125 members responded to a Community Listening survey regarding the leadership qualities and professional experience they’d value most in the next executive director. Respondents expressed an overwhelming desire for a leader who treats narcolepsy and IH as holistic daily struggles, not just medical conditions. Someone who balances professional expertise in nonprofit management with a passionate, collaborative spirit, and ideally, lived experience.
“Liz perfectly aligns with the high standards we set for our next leader, as well as community priorities,” said Keith Harper, President of the Board, Narcolepsy Network. “She brings the strategic acumen required to advance our mission, while possessing the personal passion and empathy to keep us anchored in the specific needs of the narcolepsy and IH community.”
As Narcolepsy Network kicks off its 40th anniversary, industry researchers are working on potential therapies that target the root cause of Type 1 Narcolepsy (with cataplexy) — loss of the brain chemical orexin (also known as hypocretin) — rather than just managing symptoms. Currently there are several orexin receptor agonists in clinical trials or FDA review, potentially presenting new treatment options for the community.
“We are incredibly fortunate to have Liz’s leadership at this pivotal time, as our community continues to rely on Narcolepsy Network for support and education to navigate the evolving landscape,” continued Keith.
Source Narcolepsy Network
