Sudbury Family's Narcolepsy Event Raises Awareness, Funds

SUDBURY, MA — A Sudbury teen is drawing attention to her recent diagnosis with narcolepsy as a way to raise awareness about the disorder. Mia Grisco, 16, and her parents hosted a fundraiser at their Sudbury home earlier this month to spotlight narcolepsy.

Here's more on Grisco's story from a Wake Up Narcolepsy news release:

Ever since receiving their 16-year-old daughter, Mia’s, narcolepsy diagnosis, the Grisco family has been on a mission to raise awareness about the incurable sleep disorder. On March 19, the family hosted a Sudbury SleepZzz Reception, an educational event and fundraiser, at their home.

Around 100 people attended the Sudbury SleepZzz Reception, including about 20 people with narcolepsy. Wake Up Narcolepsy (WUN) launched its public service announcement and Red Square Pictures gathered footage for its Narcolepsy Documentary.

The fundraiser benefited WUN, a Worcester-based organization that since 2008 has worked nationally on narcolepsy awareness and research. WUN is focused on funding research into the causes, prevention and treatments, and finding a cure for narcolepsy, all while raising public awareness. Since inception, WUN has awarded $1.2 million to advance narcolepsy research.

Grisco, a junior at Lincoln-Sudbury Regional High School, was diagnosed with narcolepsy in October 2022. Before her diagnosis, Mia said she began to feel tired all the time, and had a hard time staying awake.

“I started to wonder what was happening to me,” she said. “I read some articles online about narcolepsy. I thought it was possible I might have it, but I didn’t want to accept it as a possibility.”

Mia says she struggles to maintain her grades while balancing the need to nap during the school day or go to school late. She credits her friends with giving her the motivation to get through each day, and hopes more people will become aware of the challenges those living with narcolepsy face, she said.

“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.”

At the event, Dr. Ann Marie Morse spoke about the misunderstanding many people have about those afflicted with narcolepsy, including that they might be lazy. Morse is a pediatric neurologist and sleep medicine specialist with Geisinger Medical Center in Danville, Penn., who specializes in sleep-wake disorders, narcolepsy, hypersomnia disorders and neuroimmunology.

“One of the biggest drivers of this disease is very poor awareness and stigma,” Dr. Morse said. “When people are informed it shortens the time from onset to diagnosis. A person with narcolepsy looks, ‘normal,’ but the reality is they live a daily struggle. This is a condition that comes with a burden.”

Mia’s parents, Lynn and Todd Grisco, credit WUN and founders Monica and David Gow with “catching them” after their diagnosis. The Griscos say they’ve spent the last six months trying to provide Mia with the love and support she needs, especially when narcolepsy cuts her off from school, sports and socializing. WUN has provided them with resources and support.

“Mia’s narcolepsy diagnosis was a shock,” Lynn Grisco, a new WUN board member, said. “It gives us a small sense of relief to know what’s going on.”

Grisco was well acquainted with narcolepsy before her daughter's diagnosis. She worked for a pharmaceutical company, preparing for the launch of a new drug to treat narcolepsy.

“Never in a million years could I have imagined this cruel coincidence,” she 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.”

Lynn Grisco, Monica Gow, and Dr. Morse spent time at Lincoln-Sudbury Regional High School on March 20 to talk to educators about the characteristics of narcolepsy and Mia’s experience with it, in hopes of garnering understanding and support of what Mia and others with narcolepsy struggle with.

Mia said that not everyone she encounters understands her narcolepsy, and she’s not procrastinating or being lazy when she isn’t able to get things done. Mia said on a scale of zero to 100, with zero being feeling your worse and 100 feeling like you can do anything, she typically is at about a 35 during the school day.

“I may look fine, but I definitely don’t feel fine, Mia said. “I want people to have a greater understanding of the challenges I’m facing.”

Several of Mia’s close friends attended the Sudbury SleepZzz Reception, and said how important and educational it was to hear more about narcolepsy. Mia, they said, always makes an effort to be social, even when she’s faced with tiredness.

“I’m realizing the seriousness of it,” said a friend of Mia’s. “She handles it so well.”

For Monica Gow, WUN founder, the Sudbury SleepZzz Reception was a good way to raise awareness about narcolepsy, allow those with narcolepsy to socialize and share experiences, and to educate people from all backgrounds about the neurological sleep disorder.

“The demand for what we offer has increased,” she said. “The community needs so much support. It’s still taking people a long time to get their diagnoses.”

Mia’s story is one patient’s story. There are so many other patients–each with their own story.

Please consider making a donation to support this campaign for all those living with narcolepsy: https://wakeupnarcolepsy.app.neoncrm.com/forms/sudbury-sleepzzz

To learn more about narcolepsy visit the Wake Up Narcolepsy website: https://www.wakeupnarcolepsy.org

Facts about narcolepsy, from Wake Up Narcolepsy (WUN):

• Narcolepsy affects 1 in 2,000 Americans and 3 million people worldwide.
• Narcolepsy affects those with a genetic predisposition that is then activated by an environmental trigger.
• Narcolepsy can be misdiagnosed as laziness, depression, sleep apnea, ADHD, epilepsy, and other mental health disorders.
• Typical onset of narcolepsy occurs between ages 10 and 20, but can occur in younger children.
• It takes an average of six physician visits before receiving a narcolepsy diagnosis.
• For those with narcolepsy, REM sleep intrudes on wakefulness, while wakefulness intrudes on sleep.