Why is Narcolepsy Network important?
We are dedicated to improving the lives of people with narcolepsy, increasing public awarness, and promoting research. Narcolepsy Network has made an impact on countless people through its annual conference. I run a support group in New York (which has been amazing!), and I can honestly say the the conference is a life-changing experience — it’s like my support group x 100.
The bottom line is that narcolepsy is an outlier disease– only 1 out of every 2,000 people have it (and of those, about only 25% will ever be diagnosed). So it’s incredibly important that we PWN (People With Narcolepsy) stick together and support each other. There is no better way to do that than through our local support groups, online forums such as Twitter #Nchat, and by joining and / or donating to Narcolepsy Network.
The New York marathon is the best
Okay, I’m biased here because I’ve never run another marathon – yes, I’m incredibly spoiled! What makes New York an amazing experience is the insane amount of people who line the streets, and the energy they bring to the race. People will yell your name, they will bring you bananas and oranges, they will sing to you, and they will give you the boost you need to finish the biggest marathon in the world. I cannot imagine running 26.2 miles without throngs of people cheering me on — everyone who comes out to support the runners deserves their own medal!
Pro Tip: always run along the sides—people are more than willing to give you a high-five and a shout out (write your name on your shirt!) as you run along the course. It will make all the difference in the world when you start feeling like you can’t go on.
Thank you to previous fundraisers!
I’d like to give a huge thank you to everyone who contributed to my first two fundraisers. Your support really does make a world of difference to me and to Narcolepsy Network:
John & Dania Pfeffier
Julie Flygare (The REM Runner 😉
Mark Patterson, MD, PhD
Sharon Link O’Shaughnessy
The Podolsky Family
The Powis Family
And finally, here are just a few of the awesome friends who have said hello during the race:
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.
Support your local PWN
Pick up a snazzy shirt to show your support for the people with narcolepsy in your life (or just in general!) here: https://www.customink.com/g/frj0-00aq-z8dq