Dear Family and Friends,
This year I am running the 2019 Boston Marathon with "Wake Up Narcolepsy." I am so thrilled to have this opportunity because the cause is very near and dear to my heart since my 89 year old father has narcolepsy with cataplexy. Growing up, this disease had a huge impact on my family. As kids, we referred to my dad’s reaction to emotional highs and lows as “passing out”. When we were at sports games, outdoors doing yard work or even arguing amongst us kids, we were always aware that it could trigger an episode in my dad. This was in addition to his daytime sleepiness and difficulty sleeping restfully at night. Even now, it continues to affect my father; he continually needs to make sure he is keeping on top of medications and has to be aware of his limits knowing that narcolepsy and cataplexy, even with medication, is unpredictable. As a child I never really understood the true meaning of his disease, but as an adult I have grown to appreciate and respect the battle he had fought all these years.
Narcolepsy is an incurable, autoimmune, neurological sleep disorder, with many misconceptions. It affects 1 in 2,000 adolescence and young adults. It is easily mistaken for a learning problem, seizure, schizophrenia, drug use and even laziness, especially in school-aged children and teens. Cataplexy is a disorder experienced by 60% of individuals suffering from narcolepsy, including my father, which causes sudden episodes of muscle weakness brought on by strong emotions, such as humor, surprise or sadness. Individuals fall down, or “buckle”, unexpectedly during these episodes.
Wake Up Narcolepsy is a non profit organization dedicated to raising awareness, treatment and research for this disease.
My father went undiagnosed for years. He was well into his twenties, and finished serving in the armed forces, before someone took notice and took his symptoms seriously. After finally being properly diagnosed, he spent years trying to find the right help and proper medications to help him control the symptoms, find balance and deal with the challenges of everyday life. With the support of my mother, our family and friends, my father learned to live with the disease and in fact held a lead role in his family’s construction company. But there was so much unsaid over the years, not talked about, and many of his struggles were kept in the dark because he was too proud to talk about them. As a witness to his many symptoms and struggles, I want to take this opportunity to help others and take this disease out of the dark.
My goal is to spread the word about this unfamiliar disease and raise $20,000 for Narcolepsy research and treatment. All contributions are tax-deductible and will go directly to unrestricted grants and research projects. Please join me by making a donation today. Your contributions do make a difference!