By Meaghan Casey
When Monica and David Gow’s son, Thomas, was diagnosed with narcolepsy with cataplexy, they were determined to bring greater awareness to the disease and help in the search for a cure.
They teamed up with Kevin Cosgrove to establish Wake Up Narcolepsy, Inc., which has quickly become a national leader for narcolepsy research and awareness. Cosgrove, a medical sales representative for Aurora Laboratories, was diagnosed with narcolepsy in 2006. In addition to his role as the organization’s co-founder, he has become a role model to Thomas, who was diagnosed in 2008 at age 11.
“My husband and I observe in amazement our son’s quiet determination while he struggles to manage his life with narcolepsy,” said Monica. “He continues to trudge forward, never complaining. We’re lucky to have met Kevin and created the network that we have today. That part— getting to know other people with the disease—has been really good for him, and for us.”
Narcolepsy is a chronic brain disorder that involves poor control of sleep-wake cycles. People with narcolepsy experience periods of extreme daytime sleepiness and sudden, irresistible bouts of sleep that can strike at any time and can last a few seconds to several minutes. They may unwillingly fall asleep while at work or at school, when having a conversation, eating a meal or performing a number of other daily activities. Other symptoms include vivid dream-like images or hallucinations.
“Three months before (Thomas) was diagnosed, he started falling asleep all the time—while he was reading a book or at the dinner table,” said Monica. “He ended up collapsing during a pediatric visit and they sent us straight to the emergency room.”
After initially having his symptoms dismissed and being misdiagnosed twice, a multiple sleep latency test (MSLT) revealed that Thomas had narcolepsy. Monica and David both have the genetic marker for the disorder, but never had symptoms themselves, nor do their two younger children, ages 12 and 14. Thomas, now 16, was also diagnosed with cataplexy—a sudden loss of muscle tone, which makes a person go limp or unable to move.
“Narcolepsy is too often misunderstood and misdiagnosed, which is why we started on our mission,” said Monica.
Every year, Wake Up Narcolepsy hosts various awareness-driven events and makes substantial contributions to cutting-edge narcolepsy research across the country. Last year, the organization donated almost $90,000 to two of the world’s leading scientific investigators studying narcolepsy: Dr. Thomas Scammell of Beth Israel Deaconess Medical Center and Dr. Emmanuel Mignot, Director of the Center for Sleep Sciences and the Center for Narcolepsy at Stanford University’s School of Medicine.
“Over the last few years, our research has really benefited from Wake Up Narcolepsy’s support,” said Dr. Scammell, who is also an associate professor of neurology at Harvard Medical School. “It’s allowed us to pursue highrisk experiments that we have not been able to fund through the NIH.”
A majority of the organization’s funds have been raised during the Boston Marathon over the past five years. In 2010, 2011 and 2012, Monica led Wake Up Narcolepsy’s team of runners, raising remarkable awareness and research funds. David has led the team the last two years. In 2013, he was among the top 20 fundraisers of all Marathon runners, bringing in over $38,000 to benefit Wake Up Narcolepsy’s work. This year, he and 13 other runners raised more than $85,000 for the organization.
“Hockey, not long-distance running is my first sport, so training for and running a marathon is a stretch for me,” said David. “But I’d do anything for my children. Every day I watch Thomas struggle to overcome his narcolepsy. Running a marathon pales in comparison to the challenges he faces living with this invisible disease. If my efforts help kids like Thomas lead more normal lives, it’s all worth it.”
Through the organization, the Gows have also been active advocates, locally and on Capitol Hill. They are currently piloting a program in Massachusetts called Narcolepsy Goes to School, which is helping to teachers to recognize symptoms of the disease. Through social media, the idea has been expanding to other states.
Thomas, meanwhile, has been benefitting from treatments that are controlling his symptoms. One acts as a stimulant, while another controls the cataplexy, some of his daytime sleepiness and fragmented nighttime sleep.
“It’s been life-changing,” said Monica. “He still has to nap at school and be diligent about his sleep schedules, but he’s been able to live an active life and keep doing the things he loves, like playing hockey and golf.”
To learn more, visit www.wakeupnarcolepsy.org.