Jun 08 2019
WUN Opens Narcolepsy Symposium at Sick Kids
h in Blogs
On March 1-2, Monica Gow, WUN executive director and co-founder, and her son Thomas, represented the organization at a Pediatric Sleep Symposium, sponsored by the Division of Respiratory Medicine, the Hospital for Sick Children – “SickKids” – in Toronto. Joining Monica and Thomas was Gordon Gow, Thomas’s grandfather, and the liaison for the WUN Medical Advisory Board.
Fifteen-year-old Thomas has been battling narcolepsy for five years. It was the general lack of narcolepsy awareness during Thomas’s diagnosis that led Monica and David Gow, along with Kevin Cosgrove, president of the Board of Directors, to create Wake Up Narcolepsy in 2008. Kevin also is living with narcolepsy.
At the Sick Kids symposium, both Monica and Thomas spoke about “Waking Up to Childhood Narcolepsy.” Sixty participants attended the session, which was directed and hosted by Dr. Indra Narang, a sleep specialist at Sick Kids. Dr. Narang is a recipient of WUN research funding and serves on the Medical Advisory Board.
Dr. Narang noted that the number of narcolepsy cases diagnosed at Sick Kids has grown dramatically, from two to 15 in just two years.
Monica and Thomas opened the session by describing the history of Thomas’s diagnosis and showing WUN’s new public service announcement. You can view the PSA here. Displaying maturity beyond his years, Thomas spoke and responded to questions about the challenges of managing narcolepsy in his daily life, while maintaining good grades, playing competitive hockey, and sustaining a healthy social life.
Monica and David can also be seen on the Ricki Lake Show on March 7 at 4 PM on Fox. Monica and Dr. Kenneth Sassower, a neurologist at Mass General Hospital, will be interviewed live on Fox 25 on March 11 at 9:15 AM.
Dr. Narang, and Drs. Shelly Weissand and Reshma Amin each presented on different aspects of narcolepsy in childhood. Dr. Brian Murray gave a presentation on the challenges narcolepsy presents in adulthood. And Dr. John Peever, a neuroscientist at the University of Toronto, discussed his ongoing narcolepsy research.
The session wrapped-up with a Q&A panel of the speakers as well as Allison Zweerink, nurse practitioner in the Sick Kids narcolepsy clinic, and Dr. Dat Tran, an infectious disease specialist.