It’s always great to see clients who have causes close to their hearts and to see people come together to rally behind a cause (and it makes for great marketing content as well). One of the causes Umbrella Legal Marketing is passionate about is raising money and support for narcolepsy and cataplexy. Why narcolepsy and cataplexy you ask? Well, Umbrella Co-Managing Partner Lanna Barrison has a beautiful boy named Dylan who suffers from narcolepsy and cataplexy. Back in 2015 Lanna decided to launch a modest campaign in support of National Narcolepsy Awareness Day by encouraging her friends to post photos of them, their kids, or their pets sleeping, along with the hashtag #WakeUpDylan. Three years later #WakeUpDylan has ballooned into a full on fundraiser. It raised $2,000 the first year, $5,000 the second, and this year’s goal is $8,000!
What’s this lemonade stand all about?
The 3rd Annual #WakeUpDylan lemonade stand will be happening at Bakersfield Public School Park at 75 Misty Sugar Trail in Thornhill, Ontario. In addition to lemonade, there will be sweet treats, bracelets, cotton candy made onsite, and a promotional draw with amazing prizes! Bounce Entertainment will be on hand to DJ the event as well! Every single penny raised during the event will go directly to the Sleep Disorders Priority Fund at Sick Kids Hospital. The fund is earmarked specifically for narcolepsy research within the hospital.
The importance of awareness
Raising money for research into narcolepsy and cataplexy is great (and important), but it’s not all they’re trying to do. Narcolepsy and cataplexy are little, or misunderstood diseases. They aren’t directly life threatening, but they do have a severe impact on the lives of those who suffer, as well as those who care for them. By raising awareness they hope to help people develop an understanding and acceptance of what those suffer from narcolepsy and cataplexy are going through. Children with narcolepsy can suffer from exhaustion, spending most of their days warding off sleep. They can be too tired to venture outdoors and can suffer from mood swings as a result of fatigue. Money is great, because it can help lead to a cure. But awareness is just as important, because it leads to an understanding of what Dylan and others are going through.
What is narcolepsy?
Scientifically speaking, narcolepsy is a lifelong, incurable, neurological disorder caused by the depletion of the neurotransmitter hypocretin/orexin that affects sleep and wakefulness. Practically speaking, people suffering from narcolepsy feel as though they have been awake for three days straight. They don’t sleep well at night, and they’re sleepy during the day. When they do sleep, they spend too much time in the deep stage of REM sleep, while not spending enough time in restful, restorative stages. Narcolepsy can lead to hallucinations and sleep paralysis.
What about cataplexy?
Those suffering from narcolepsy often suffer from cataplexy as well. Cataplexy is a loss of muscle tone, often experienced during periods of strong emotion such as laughter, sadness, and anger. Cataplexy experiences range from droopy eyelids or a protruding tongue to a full body collapse. It is currently treated by antidepressants such as Prozac or Effecor, which suppress REM sleep and improve sleep quality. Xyrem (commonly referred to as the date rape drug) can also be used as treatment. However the side effects of these drugs are long and scare, and the long-term effects of their use is not fully understood.
Want to help?
If you live in the Toronto area it would love to see you on June 24. But it’s understood that many people live outside of the GTA or have other commitments. What is really need is awareness. Feel free to use the #WakeUpDylan hashtag, and share it if you see it on social media. Narcolepsy isn’t a popular media story, and any awareness that can be spread across the community is vital to the goal of creating a better understanding of the disease. Please feel free to visit this website to learn more about narcolepsy and cataplexy or click here to donate to the cause.