She brings over 20 years of nonprofit leadership and personal rare disease experience to guide the patient advocacy group.
Key takeaways:
- Liz Burgess has been named the new executive director of Narcolepsy Network, and she over two decades of experience in nonprofit organization leadership.
- Burgess assumes the role as the organization marks its 40th anniversary and as industry researchers develop new therapies targeting orexin loss.
Narcolepsy Network, a national nonprofit organization for people living with narcolepsy and idiopathic hypersomnia (IH), has appointed Liz Burgess as its new executive director.
Burgess has dedicated her career to mission-driven leadership, serving for more than 20 years as an executive director for a diverse range of nonprofit organizations. Most recently, she led the revitalization of Bleeding Disorders Alliance Illinois. Her background in the rare disease community provides an understanding of the unique challenges—ranging from fiscal sustainability to pharmaceutical partnerships—required to keep specialized patient advocacy groups thriving.
Diagnosed with epilepsy as an adult, Burgess also brings personal experience with a life-altering diagnosis to the position.
“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,” says Liz Burgess, executive director of Narcolepsy Network, in a release. “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 survey regarding the leadership qualities and professional experience they would value most in the next executive director. Respondents expressed a desire for a leader who treats narcolepsy and IH as holistic daily struggles rather than just medical conditions, balancing professional expertise in nonprofit management with a collaborative spirit and lived experience.
“Liz perfectly aligns with the high standards we set for our next leader, as well as community priorities,” says Keith Harper, president of the board for Narcolepsy Network, in a release. “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.”
The appointment coincides with Narcolepsy Network’s 40th anniversary and a period of clinical development in the sleep medicine field. Industry researchers are currently working on potential therapies that target the root cause of type 1 narcolepsy—the loss of the brain chemical orexin (hypocretin)—rather than solely managing symptoms. Several orexin receptor agonists are currently in clinical trials or under 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,” says Harper in a release.
