Dear Friends & Family,
This year I am running the 2019 Boston Marathon with “Wake Up Narcolepsy,” an organization that has grown very close to both my heart and brain. In January of 2018, I was diagnosed with Type 1 Narcolepsy with Cataplexy, which is an incurable, autoimmune, neurological sleep disorder triggered by the destruction of a small class of hypothalamic neurons that control critical states of human consciousness. This disease presents in adolescents and young adults, causes lifelong symptoms, and affects me and ~200,000 other Americans every day.
As I train for the Boston Marathon and share my Narcolepsy story, I am asking for your compassion and support for this cause. My life today is quite different from the life I had a year ago. Each day poses its own unique challenge, requiring around the clock medication, scheduled naps, and constant adaptation. Every day, with the support of family, friends, colleagues & doctors, I learn a bit more about how to live with, and live well with this fascinating, frustrating disorder.
By fundraising with Wake Up Narcolepsy, I hope to spread awareness about the science, symptoms, prevalence and seriousness of Narcolepsy.
In addition to raising awareness, I also hope to raise at least $20,000 for Narcolepsy research. All contributions are tax-deductible and will support the research of two renowned narcolepsy researchers (both of whom are my doctors), Dr. Thomas Scammell at Beth Israel/Harvard and Dr. Emmanuel Mignot at Stanford. Each and every dollar will fund their research into the causes and treatment of narcolepsy, and enable intervention strategies focused on reversing rather than simply managing this disease, better treatments, and someday, a cure. Thanks to these two experts, I am the recipient of the first investigational immune therapy aimed at protecting my hypothalamic neurons from further immune mediated destruction. Your support will help foster cutting edge research in the hopes of providing the next generation of people affected by narcolepsy a brighter, more wakeful, future.
I am forever grateful for your kindness & support and encourage you to give big to “Wake Up Narcolepsy.” It would mean a lot to me.
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