Wednesday, October 24, 2012

Narcolepsy Network's Annual Conference

Click on the banner for more information!
This past weekend was the Narcolepsy Network's 27th Annual Patient Conference, which I had the pleasure of attending! Conveniently (for me), located in Cleveland, OH on the campus of the Cleveland Clinic, the conference's theme this year was "Banding Together Over Narcolepsy", noting the city's fame as the birthplace of rock 'n roll.

These conferences are a great way for people with narcolepsy to meet others just like them from all over the country (and even internationally from Canada and Australia this year!) and support each other. I had a fantastic time this year; same as last year, just a different city!

The speaker I was most excited to hear was the amazing Dr. Emmanuel Mignot himself; the Parisian director of the Stanford Center for Narcolepsy who is internationally recognized as having discovered the cause of narcolepsy. Just as exciting was getting to see my role model, REM Runner Julie Flygare, again after an entire year! (By the way, be sure to check out Julie's amazing essay "Sleep's Choice", recently published in SleepMatters: A Publication of the National Sleep Foundation).

Lucas and Ethan
I was so glad to see all my "sleepy" friends doing well and having improved in many ways since I last saw them. Bailey from Texas has found ways to drastically minimize her horrible cataplexy and has even gotten her driver's license--much better compared to a year ago when she thought she'd never be able to drive. Cejae was the most popular attraction of the conference, with her new masseuse certification and massage chair on hand to provide some professional relaxation instead of just "homework practice" as we called her massages a year ago. I met plenty of new friends as well. There was Ethan, a junior in high school who had us laughing the whole time; Raenah and Autumn, step-sisters who were there to either learn more for herself (Raenah, the narcoleptic one) or to gain a better understanding of what her sister has to go through every day (Autumn, the non-narcoleptic one); Lucas, the soccer champ from Australia who came a long way with his family for the conference; and so many more it would take me forever to list them all!

My Public Awareness Award :)
I was so honored to be given an award from the Narcolepsy Network Board as well! The annual Public Awareness Award has been given to some great narcolepsy advocates in the past, such as advocacy devotee Julie Flygare and professional golfer Nicole Jeray. This year the award was given to three people; narcoleptic couple Katy Scruton & Robby Roden and myself, for our roles on MTV's True Life: I Have Narcolepsy. Unfortunately Katy and Robby were unable to attend the conference, so I had to make a short thirty-second impromptu "few words" by myself... To call that the most nervous moment of my life would be an understatement!

As a final note, I'd like to give a shout-out to Cassie from Oklahoma :) Her father, Larry, sent me an e-mail to tell me that he liked my blog (I have fans, like actual fans?! This e-mail totally made my day!) and told me a little about Cassie. Being a freshman in high school is hard enough, and adding narcolepsy into the equation doesn't make it any easier. Keep on smiling, Cassie, and good luck with volleyball!

I suck at volleyball now thanks to my cataplexy making my arms go weak when I try to hit the ball, but I still play with friends and make an absolute FOOL of myself! :D