On March 12th, 2016 – Suddenly Sleepy Saturday – dozens of people gathered in a parking lot at the Covenant Presbyterian Church in Roanoke, Virginia, to bear witness to what is undoubtedly the weirdest event in the history of the narcolepsy community. Five teams of enthusiastic narcolepsy supporters constructed, decorated, and raced beds around a parking lot to raise awareness and money for Narcolepsy Network.
There was food. There was coffee. There were people of all ages — childrens’ faces were painted, and grown men were dressed as sheep. There were teams of dalmatians, accompanied by Cruella Deville. There were people dressed up as candy. There were cruise ships with steering wheels, anchors, and life jackets. There were minions — so many minions! There were plush minions attached to headboards. There were adults dressed as minions, checking their minion-themed watches, whilst scanning the course with their minion-themed goggles. There were talking minions strapped to bed posts. There were Minions riding on an adult’s lap, on a bed attached to wheels, pushed by more adults. This my friends, is the Narcolepsy Bed Race.
Sweet Dreams are made of... adults dressed up as candy #narcolepsybedrace
"Sweet Dreams are made of... adults dressed up as candy #narcolepsybedrace"
Even Cruella DeVille is at the #narcolepsybedrace - help us support @narcolepsynetwork by donating…
"Even Cruella DeVille is at the #narcolepsybedrace - help us support @narcolepsynetwork by donating at https://www…
The number of supporters at the bed race was impressive – they must have outnumbered the people with narcolepsy by about 25 to 1. The level of enthusiasm, and the commitment required to build these racing beds, was pretty incredible. The narcolepsy community is very small (only about 1 out of every 2,000 people has narcolepsy—and only about 25% of them are ever diagnosed). Creating unusual and interesting events like the bed race is key to breaking through the noise of everyday life and generating more awareness.
A huge thank you is due to Mark Patterson, his family, his church, and for all of the volunteers who brought this weird idea to life. It would not have been possible without support from the following organizations and people, many of whom participated in the bed race itself:
- The Dojo Grill food truck provided fabulous food, including the local wonder “Sweet Baby Chees-us”
- Covenant Presbytarian Church made this event possible by lending us many helping (and racing!) hands. They also let us use their parking lot, which is mostly flat, but boy that little hill at the end…
- Physicians To Children looks after the health of infants, children, adolescents and their families throughout the Roanoke Valley.
- Child Health Investment Partnership is an early childhood home visiting program that pairs low-income children (birth to kindergarten), with a Community Health Nurse and Family Case Manager for health care coordination, developmental education, kindergarten preparation, and regular child assessment / monitoring.
- The Carilion Clinic Sleep Center contributes many helping hands to the bed race. The clinic also runs a Narcolepsy Support Group, where people with narcolepsy can discuss the effects of living with narcolepsy and how many deal with this condition
- The Virginia Furniture Market donates all of the mattresses used in the race—four years running now—and the mattresses are passed to the Salvation Army at the end of the race, helping homeless clientele to get a good night’s sleep.
What is Narcolepsy?
Narcolepsy is a rare sleep disorder that affects approximately 1 out of every 2,000 people. Out of those people, only about 25% are ever diagnosed. It is poorly understood by both the general public and within the medical community. Narcolepsy is considered a socioeconomic disorder, because it impacts the personal and professional lives of people with narcolepsy.
Narcolepsy is characterized by a range of symptoms, which may vary greatly from person to person. The primary symptoms of narcolepsy include:
- Excessive daytime sleepiness — imagine pulling an all-nighter, this is what a person with narcolepsy feels like every day.
- Cataplexy — this is a sudden loss of muscle tone, usually triggered by emotions or stress. Cataplexy’s effects can range from a slight sagging of the jaw, to a full-body loss of muscle tone. About 70% of PWN experience cataplexy.
- Hypnagogic hallucinations — these are essentially dreams that occur before a person with narcolepsy has fallen asleep.
- Fragmented sleep — narcoleptics who experience this wake up very briefly, many times each night, often without realizing it.
- Sleep paralysis — the inability to move upon falling asleep and / or awakening.
Read more about the annual narcolepsy bed race, browse photos, and prepare for next year’s grueling bed race (seriously, that hill!) at http://www.narcolepsybedrace.org/. You can also search social media for the hashtag #narcolepsybedrace
Narcolepsy Network is dedicated to improving the lives of men, women, and children with narcolepsy. The organization’s goals include increasing public awareness to foster early diagnoses; advocating for all persons with narcolepsy; promoting and supporting narcolepsy and related research; and providing education and resources both to people living with narcolepsy and the public at large.
We need more weird events like this to build awareness about narcolepsy. If you have a weird event in mind, consider joining Narcolepsy Network or find a local support group to get involved with. There are undoubtedly other things we as a community can do to bring more awareness to the public — I challenge you to top Mark’s bed race!