The author-patient advocate’s initiatives include raising more funds for research and increasing narcolepsy awareness on a national level.
Wake Up Narcolepsy (WUN), a nonprofit for narcolepsy research and awareness, recently announced Claire Crisp as its executive director, taking the role previously held by Monica Gow, who co-founded WUN and was executive director for 8 years.
Crisp, who was a physical therapist for a decade, got her start in patient advocacy when one of her three children, Mathilda, was diagnosed with narcolepsy and cataplexy after receiving the H1N1 flu vaccine in the United Kingdom. Crisp eventually self-published Waking Mathilda, a book about her family’s quest to provide life-changing treatment for their young child. “It was a battle to get a diagnosis and even more of a battle to get treatment,” says Crisp. “We ended up moving to California from the UK so that she could get treatment at Stanford.”
Filling the shoes of the previous executive director is no small task, but Crisp has big plans for WUN. “The main goal is to try and increase funds through events and donors so we can really make significant headway into supporting research for narcolepsy,” she says. “I would love to raise large amounts of money for research to place a strong focus on treatment and, ultimately, the goal of a cure.”
The other piece of the puzzle is to bring more awareness to the neurological sleep disorder. She says, “I really want to bring narcolepsy onto a much bigger stage because it is so misunderstood, misrepresented, and incredibly underdiagnosed. My job is reinforcing that and gaining momentum on top of the work that’s already been done.”
Although Crisp is prepared for the job, she is still learning a lot from Gow. Gow is “still very much present and teaching me the ropes,” Crisp says. “She’s still working on it full-time and hopefully I will be able to take the pressure off her in some time.”
An initiative of Gow’s that Crisp would like to continue is making strides to reduce the time between onset of narcolepsy symptoms and diagnosis. “It takes 10 to 15 years from the start of symptoms to when people realize they have the condition,” Crisp says. “That’s one thing that has been important to WUN—decreasing that time and getting patients help faster.”
Crisp has high hopes for the future of WUN and for narcolepsy patients everywhere. “We want people with the disorder to know they’re not being ignored and there is research going on that ultimately will help them. Increasing public awareness and making people understand that it is a seriously debilitating disorder, and not just laziness or how it’s perceived in the media as a joke,” she says.
At the end of the day, Crisp wants more support for patients with narcolepsy because she simply wants to make them feel better. “I think it’s important to truly support people with narcolepsy—they need to be understood by their teachers, their doctors, their peers, and especially their families,” she says. “I do this is because I want to make lives better for people with narcolepsy.”
Dillon Stickle is associate editor of Sleep Review.