Jan 03 2023
Wake Up Narcolepsy: “Waking Up” Awareness with Executive Director Monica Gow

By: Tana Bao MSN, NP-C, RN

Wake Up Narcolepsy (WUN) is a non profit organization dedicated to raising awareness for narcolepsy, a chronic neurologic disorder that severely disrupts the brain’s ability to regulate sleep wake cycles. In people with narcolepsy, this instability among the phases of sleep presents with the hallmark symptom of excessive daytime sleepiness — an overwhelming and irrepressible urge to sleep that can often occur at unwelcome times, such as during a meal or even in the middle of a conversation¹. A rare disorder affecting only about 1 in 2000 Americans, narcolepsy is often unbeknownst to the general population².

Since its inception in 2008, WUN has dedicated its mission and advocacy efforts to raising awareness as well as research funding for narcolepsy. To date, Wake Up Narcolepsy and its supporters have successfully raised $3-4 million dollars to advance its mission. $1.2 million of this has been used specifically to accelerate research. For Wake Up Narcolepsy’s Co-Founder and Executive Director Monica Gow, the mission is personal: Monica’s own son started showing symptoms of narcolepsy in March of 2008 and received his diagnosis about three months later in June of 2008. Back then when she took to the internet in hopes of finding more information, Monica realized there were virtually no resources geared towards helping patients and families living with narcolepsy. So, she took matters into her own hands and six months later founded the non profit Wake Up Narcolepsy to fill this gap.

At the time, Monica and her family were surprised to learn that people go over ten years before they get a diagnosis, on average. She states “we couldn’t even wrap our brains around that because three months was extremely difficult” for her and her family. This intimate understanding of how strenuous the journey to diagnosis can be for people with narcolepsy is a large part of what continues to motivate Monica’s work and leadership that she provides WUN even over a decade later.

In addition to fundraising, Monica states she and her team at WUN are here to “help people in the community in every way possible that they need help.” For instance, Wake Up Narcolepsy is proud to offer educational webinars, online support groups, and educational camps for children living with narcolepsy – all of which would be nonexistent without WUN’s presence and the generous corporate sponsors.

Narcolepsy is extremely challenging to both see and understand since it is not visible with the naked eye. This is one of the many reasons why WUN’s advocacy efforts are so vital. People cannot actually see the grueling, internal battle people with narcolepsy face everyday just to stay awake. WUN, as its name implies, will continue to help “wake up” people with narcolepsy by bringing attention to this invisible illness. WUN will also, just as importantly, continue to work tirelessly to “wake up” public attention and awareness for this disorder as well. In doing so, WUN will continue to serve as an invaluable resource to people with narcolepsy and pave the path forward towards ultimately finding a cure.

If you would like to donate to Wake Up Narcolepsy, learn more about this rare disorder, or would like more information on how you can get involved, please visit this link. Monica and the team at Wake Up Narcolepsy would love any and all support and are always looking to add passionate volunteers and staff to their organization!

Sources
¹ https://medlineplus.gov/genetics/condition/narcolepsy/#description

² https://medlineplus.gov/genetics/condition/narcolepsy/#frequency