BENEFITING: WAKE UP NARCOLEPSY INC
ORGANIZER: WAKE UP NARCOLEPSY INC
EVENT: 2013 Boston Marathon
EVENT DATE: Apr 15, 2013
I am a clinical psychologist and director of the Behavioral Sleep Medicine Program at Montefiore Medical Center's Sleep-Wake Disorders Center in New York City. I often work with patients who have narcolepsy and routinely see how this disorder can dramatically affect patient’s lives and the lives of those around them.
Narcolepsy is a serious neurological disorder with no cure and limited treatment options. It is greatly misunderstood and stigmatized in the general public, with many patients misdiagnosed for 10-15 years before obtaining a proper diagnosis. Many doctors are not well-versed in the symptoms of narcolepsy, and I commonly see patients mislabeled as depressed, bipolar, lazy, or even schizophrenic.
I’ve chosen to run the Boston Marathon with WUN as a way to bring more awareness to narcolepsy, both to the general public as well as the medical and psychiatric field. I'd also like others to understand the various psychosocial stressors that narcolepsy can cause and how it truly is an illness that affects both patients and their families.
In 2008, I was out of shape, 20 pounds overweight, and about to turn 30. I was always working with my patients on their diet and exercise, but I wasn't doing anything about my own physical health. I needed to make a change and have since run 4 full marathons, raising over $10,000 for the Leukemia and Lymphoma Society as a part of my past training.
Marathon training is intense, draining, and a major time commitment. I recently contemplated taking a break from full marathons since I’ve been training non-stop for the past 18 months. When I was asked by WUN to run Boston, I knew I couldn’t pass it up. I’m honored to run for WUN as well as my patients who quietly struggle with their illness on an hourly basis.
As tired as I may get juggling work, family (with a toddler!), and running upwards of 45 miles per week, I know my tiredness will eventually dissipate, unlike my patient’s narcolepsy.
People everywhere living with narcolepsy will benefit from your contribution. Thank you!