BENEFITING: WAKE UP NARCOLEPSY INC
ORGANIZER: WAKE UP NARCOLEPSY INC
EVENT: 2015 Boston Marathon
EVENT DATE: Apr 20, 2015
On Monday, April 20, 2015, I will run the 26.2-mile Boston Marathon as a John Hancock Charity Runner for Wake Up Narcolepsy (WUN) and for the millions worldwide living with narcolepsy, including my17-year-old son, Thomas. I have set $50,000 as my fundraising goal this year and I hope you take a moment to read why I need your help. Wake Up Narcolepsy continues to be the only organization in the US that helps to accelerate narcolepsy research through fundraising.
In November 2008, six months after my then 10-year-old son was diagnosed with narcolepsy, I co-founded Wake Up Narcolepsy, a non-profit dedicated to supporting research for this debilitating medical disorder. Your support during these past seven years has been humbling and has brought me to tears many times.
When a rare, misunderstood, serious medical disorder hits your 10-year-old child, there is nothing a parent would not do to help them. Most doctors are not aware of this disorder and frequently misdiagnosis it as depression, schizophrenia, ADHD, and other disorders. As complex as it is, narcolepsy carries 17 known symptoms with the most common being extreme sleepiness throughout the day, insomnia at night, loss of muscle control to the point of falling to the ground, hallucinations and sleep paralysis. In order to function, my son is heavily medicated and although we worry about the potential long-term effects of these serious medications, his life without them would consist of sleeping 18-20 hours per day and constantly collapsing. Even with his daily concoction of medications, his body is a prisoner to sleep, taking 2-3 naps every day. For Thomas, narcolepsy is invisible, which means if you looked at him, you would think he was a perfectly healthy boy. His brain has lost all of the cells (orexin), which control his sleep cycle, so his sleepiness never goes away.
Running the Boston Marathon will help the narcolepsy community and I am glad I can do this minor activity to help. I am not a runner by nature, and didn’t start running until the age of 46 when I started training for my first marathon three years ago. The money we raise is so very important to the researchers and they have come to depend on it (see your impact below). The funds I raise through my Boston Marathon efforts will be donated directly to support narcolepsy research.
Please support me by clicking here to make a donation as I work hard to train and run the 119th Boston Marathon for narcolepsy research. Also, donations may be mailed to Wake Up Narcolepsy, PO 60293, Worcester, MA 01606. Thank you for your support and interest!