Since Lynn and Todd Grisco’s 16-year-old daughter, Mia, was diagnosed with Narcolepsy in October 2022, the Grisco family has worked hard to love and support Mia in her daily life as she balances school, sports, and a social life–all while dealing with the near constant fatigue brought on by her Narcolepsy.
Not long after Mia’s diagnosis, the Griscos reached out to Wake Up Narcolepsy, and credit WUN with providing much-needed support, information, and resources in the wake of Mia’s diagnosis. The Griscos have made it their mission to raise awareness about the incurable sleep disorder. It was only fitting, they decided, to hold an educational event and fundraiser in their home.
On Sunday, March 19, 2023, the Griscos hosted the Sudbury SleepZzz Reception to benefit WUN. Around 100 people joined the Griscos at their home for the event, including about 20 people with Narcolepsy–offering them a unique chance to talk to one another and share experiences.
At the event, WUN launched its Public Service Announcement and Red Square Pictures gathered footage for its Narcolepsy Documentary. The crowd, after having a chance to mingle and share food and drink, also heard from several speakers, including Mia, Lynn and Todd Grisco and Dr. Ann Marie Morse.
Dr. Morse is a pediatric neurologist and sleep medicine specialist with Geisinger Medical Center in Danville, Pennsylvania, who specializes in sleep-wake disorders, Narcolepsy, Hypersomnia disorders, and neuroimmunology.
Dr. Morse spoke about how sometimes people with Narcolepsy are seen as lazy, and how other misconceptions about Narcolepsy permeate the media. Dr. Morse called Narcolepsy a condition that comes with a burden. She also noted that Narcolepsy is more common than we think and urged anyone experiencing sleepiness throughout their day to seek medical attention.
Mia, a junior in high school, spoke about her struggles to maintain her grades while balancing the need to nap during the school day or go to school late. She credited her friends with helping her get through her challenges. Mia wants more people to understand how tough it is to experience Narcolepsy every day.
“It’s so much more complex than just falling asleep,” Mia said. “My sleep is not like your sleep. When I wake up, it feels like I haven’t slept.”
Todd Grisco spoke about how Narcolepsy drugs are complicated and hard to access, and shared Mia’s experience trying three different medications so far in her Narcolepsy journey. Todd highlighted the need for funding to support more research on drugs that could help those with Narcolepsy.
Lynn Grisco, who was appointed to the WUN board of directors in 2023, also spoke at the event. Before Mia’s diagnosis, Lynn happened to work for a pharmaceutical company preparing for the launch of a new drug to treat Narcolepsy. When Mia began to feel tired constantly, and had a hard time staying awake, Lynn suspected Narcolepsy. But the diagnosis still came as a shock.
“Never in a million years could I have imagined this cruel coincidence,” Lynn said. “It has been a humbling experience. I heard a lot of patient stories. But I’ve learned that those stories mean something different when you’re hearing them from your own daughter.”
The Griscos are committed to raising funds for the Wake Up Narcolepsy (WUN) organization, with the aim of promoting awareness about Narcolepsy, providing support for children and adults who live with this condition, and contributing to research efforts related to Narcolepsy.
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To read more about the Grisco’s reception, read Sudbury Patch’s post about the event.