The Boston Globe recently featured Project Sleep Rising Voices speaker and narcolepsy advocate Katelynn O’Connell in an article about narcolepsy. Katelynn was diagnosed with narcolepsy with cataplexy in the midst of her freshman year of high school, after first experiencing mysterious symptoms during middle school.
The article by The Boston Globe highlights promising developments in narcolepsy treatment, including a new class of experimental drugs designed to target the neurological root of the disorder: orexin deficiency. Companies like Takeda, Alkermes, and Centessa are advancing clinical trials for orexin agonists that could revolutionize care and improve quality of life for those with narcolepsy. For Katelynn and many others living with narcolepsy, these innovations represent hope for a future with fewer limitations and more freedom.
“If this could address the disrupted nighttime sleep, the excessive daytime sleeping, the cataplexy, and the rest of the symptoms in between, then that’s a game changer,” Katelynn says. “This would be as close as one could get to living a near-normal life.”
Katelynn is a working professional from the Boston area who delights in knitting, making new friends, engaging in meaningful conversations, and consuming memoirs and biographies of all kinds. As a speaker with Project Sleep’s Rising Voices leadership program, Katelynn hopes that sharing her story will help to combat the stigma and misconceptions around this neurological sleep condition, while also cutting down on the all-too-common delays to diagnosis.
We’re incredibly grateful to Katelynn for sharing her powerful story in The Boston Globe and helping raise awareness about narcolepsy on a national stage. Her openness about the daily realities of living with this misunderstood sleep disorder, like managing cataplexy, navigating misdiagnosis, and structuring her life around medication and naps offers a vital glimpse into the challenges faced by millions worldwide. Read The Boston Globe article, “‘As close as one could get to living a near-normal life’: Experimental narcolepsy drugs bring hope to patients,” written by Jonathan Saltzman.
Project Sleep’s Rising Voices program serves the dual purpose of fostering a new generation of patient-advocates spreading awareness of sleep disorders while empowering participants. Learn more and book a Rising Voices speaker.
