Narcolepsy advocacy organization Wake Up Narcolepsy (WUN) hosted its inaugural Shadows to Light Gala in New York City on September 20, 2024.
This large-scale in-person gala raised $450,000, which will be put toward furthering narcolepsy education and awareness, expanding supportive resources for individuals and their families, and accelerating the development of improved treatments.
The event brought together influential members of the narcolepsy community, including patients, advocates, healthcare professionals, and researchers, to shed light on this often misunderstood sleep disorder, help people recognize the signs and symptoms, and support ongoing efforts for research and advocacy.
“Our mission is to educate and empower individuals affected by narcolepsy and raise awareness of the signs and symptoms of excessive daytime sleepiness—ultimately helping us to reach the many individuals left undiagnosed,” says Monica Gow, co-founder of Wake Up Narcolepsy, in a release. “This event is the pinnacle of our efforts thus far. We are humbled that so many influential members from in and around the narcolepsy community felt passionate enough to come together and help us further that mission.”
Ginger Zee, chief meteorologist and chief climate correspondent at ABC News, was the emcee. “While narcolepsy is slowly becoming better understood, it remains massively underdiagnosed,” Zee says in a release. “Bringing together our collective voices through events like the Shadows to Light Gala helps us to raise greater awareness of the condition and make significant strides toward more treatment options and a cure.”
The event featured stories from inspiring individuals living with narcolepsy, including Mia Grisco of the event’s Mission Family; a silent auction that included items such as signed copies of former Bachelorette Hannah Brown’s latest book Mistakes We Never Made and her memoir God Bless This Mess; and guests like Emmanuel Mignot, MD, PhD, of Stanford University, who discovered the gene marker for narcolepsy.
Individuals who have made significant contributions in narcolepsy treatment, research, and advocacy were recognized. The award winners were:
- Event Honoree: Trailblazer Award: Burt Zweigenhaft, PhD, executive vice president, FFF Enterprises, founder and co-chair Association of Value-based Cancer Care
- Researcher Pioneer Award: Kiran Maski, MD, MPH
- Patient Advocacy Award: Anne Marie Morse, DO
It also featured a meet and greet with key opinion leaders, along with an educational forum that brought together experts in the field to address the current state of diagnosis and management, as well as their takes on the future directions that will better support people with narcolepsy.
Shadows to Light Gala Diamond Sponsors included Avadel Pharmaceuticals, FFF Enterprises, and Jazz Pharmaceuticals.
Leave a Reply