BENEFITING: WAKE UP NARCOLEPSY INC
ORGANIZER: WAKE UP NARCOLEPSY INC
EVENT: 2017 Boston Marathon
EVENT DATE: Apr 17, 2017
In November of 2015, my almost 4 year quest for a diagnosis finally came to an end when I was diagnosed with narcolepsy. After 4 years of struggling to function socially and academically I finally had an answer. Towards the second half of high school and into college my naps got longer and my grades got lower. I would lay on my bed after a normal day of school and fall asleep fully dressed with my shoelaces still tied, waking up the next morning with a facemask I was supposed to wash off crusted to my skin. Sitting at the dinner table when I went home for the weekend or listening to a normal lecture (even after a normal nights “sleep”) was torture. Any type of sitting still was unbearable. I would find myself a millisecond away from napping while waiting at a red light, my eyelids moving in slow motion, desperate to close. I was alive and I seemed healthy, but for years I was never truly awake. Even though I've been diagnosed, I will spend the rest of my life figuring out how to mange living with narcolepsy, the best medications to take, and the interactions with other medications and conditions. I’m running the 2017 Boston Marathon to increase awareness about narcolepsy and raise funds to support narcolepsy research. My diagnosis took 4 years but for some people with narcolepsy it can take a decade. I’m running to change the percentage of narcoleptics who are currently diagnosed from 25% to 100%. If you saw me on the street, you would have no idea that I’m not really here. But my eyes are already closing, I’m drifting off, my brain distant from conversations and lessons and people I love. I’m running the Boston Marathon because I want to increase empathy for those with an invisible illness. I want to help them discover that they’re not dumb, inadequate, inattentive, or lazy. I feel honored to have been given the opportunity to represent all people with narcolepsy, speak on their behalf, and spread awareness. We don’t have a choice about being present in our lives. But new research could change that. Thank you for your support. WAKE UP NARCOLEPSY INC wrote -
Wake Up Narcolepsy is excited to share that 2017 marks the eighth consectutive year that our Team WUNners will run the Boston Marathon to increase awareness about Narcolepsy and raise funds to support Narcolepsy research. Narcolepsy is a serious, severely misunderstood and misdiagnosed medical disorder in desperate need of funding for research. The funds raised by Wake Up Narcolepsy through the 2017 John Hancock Boston Marathon Non-Profit Program will be donated directly to Narcolepsy researchers working to gain a deeper understanding of this serioous medical disorder in order to improve the lives of those suffering from Narcolepsy.
We are deeply grateful to our dedicated team members who work tirelessly to both train for this prestigious athletic event, and reach out to friends, family and collegues for support. We are also grateful for the generousity of our donors, many of whom have supported the mission of Wake Up Narcolepsy since the beginning. Through the untiring efforts of our WUNners and our supporters, we are able to help speed Narcolepsy diagnosis through greater awareness and provide research funds for improved treatment, prevention and a cure.
To learn more about Wake Up Narcolepsy, visit our website at http://www.wakeupnarcolepsy.org.