Each year WUN participates in the highly competitive Boston Marathon and we need your help to get our team there to raise awareness. The funds raised by Wake Up Narcolepsy through the John Hancock Boston Marathon Non-Profit Program will be donated directly to Narcolepsy researchers working to gain a deeper understanding of this serious 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 colleagues for support.
Hi – my name is Jennifer Yeatts and I am proudly running at the 2019 Boston Marathon in honor of my son, Owen, who has Narcolepsy.
To “briefly” summarize his story: Owen’s symptoms came on suddenly when he was 10. We spent the next year in a frustrating process of figuring out what was wrong as his symptoms were so unusual. Besides appearing exhausted and sleeping all the time, his mood became… well, wonky. He would kinda fall down when he would laugh and began suffering from night terrors. Due to his young age, he had difficulty articulating what he was experiencing.
When Narcolepsy was first suggested, my initial reaction was disbelief and denial. My understanding of the condition was limited to what I had seen in Hollywood movies and what we were experiencing was far more complex and disturbing. The moment of reality came during a doctor’s visit when Owen was asked whether it felt like his face drooped when he was really happy. I clearly remember thinking the doctor was a complete wackadoodle. Yet my son’s face lit up with recognition and understanding. A sleep study confirmed what we feared.
So all these bizarre symptoms are not unusual…if you have Narcolepsy with Cataplexy; cataplexy being the sudden loss of muscle control when experiencing strong emotions…often joy. The hallucinations were also “normal” where his body would also become paralyzed so he couldn’t even fight back the monsters. Imagine learning to cope with these symptoms during this incredibly vulnerable stage of personal, academic, social, and emotional development! That is why Owen is a warrior and my hero.
We’ve come a long way personally and in the field in terms of diagnosis and treatment. Owen is nearly 14 now and partially managed with meds, lifestyle adjustments, and diligence. He is happy, intelligent, and incredibly witty; though as a parent it is difficult to watch him suppress outright laughter due to his fear of cataplexy. This remains a chronic lifetime condition and we continue on this strange road trip with Narcolepsy in the driver’s seat and we its passengers with an uncertain destination. Occasionally we go somewhere kinda interesting that even makes us laugh. But mainly we just try to stay on the road with a sense of optimism and humor. Running for Wake Up Narcolepsy (WUN) as a “wunner” is an opportunity to grab the wheel and take control by raising awareness and funding for research. You can’t win or lose if you never run the race, whether that is the Boston Marathon or the race to beat Narcolepsy. Thank you for your support in this journey!
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 $50,000 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.
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!
Dear Friends & Family,
I have decided to run the 2019 Boston Marathon with Wake Up Narcolepsy to support my cousin James, who was diagnosed with narcolepsy with cataplexy when he was 10 years old. The year leading up to James’ diagnosis was extremely difficult – he regularly felt as if he had not slept in 72 hours. He was tired, cranky, and frustrated that he would fall asleep everywhere. James loves playing sports and hanging out with friends, but he would avoid these things out of fear of falling asleep. His family knew something was wrong, but tests from his pediatrician all came back normal. After a year of doctors appointments with all kinds of specialists, James was finally diagnosed with narcolepsy with cataplexy. At first, it was a relief that he was not going crazy, and that the symptoms he was feeling had a name to them. However, soon it sunk in that this was something he would have to deal with his whole life. After his diagnosis, James began taking stimulants to help him stay awake during the day. Though the medicine helped with his day-time sleepiness, the medicine is not perfect. I’ve chosen to run for this cause to raise awareness for this disease that changed my cousin’s life, and funds for research for a cure. Any and all support along the way is greatly appreciated – see you at the finish line!