It wasn’t until Shane Burcaw realized his popular, pithy blog, Laughing at My Nightmare, had reached critical mass in 2011 on the social media site Tumblr that he and supporters thought it was time to develop a nonprofit organization earmarked to aid muscular dystrophy research.
Diagnosed with spinal muscular atrophy and relegated to a wheelchair by the age of 2, he never walked or crawled, and eventually this disease will take his life. He will lose his ability to speak, eat and breathe on his own. Through all of this, he retains a healthy outlook on life with an extraordinary mind; the disease will not take that from him. Burcaw, noted for nonstop positive messaging and keen humor, recalls matter-of-factly, “With a half a million followers, we realized the blog was more than a passing fad.”
Now, three years later, the courageous 22-year-old is Executive Director of Laughing at My Nightmare (LAMN), a 501(c)(3) organization, and has a team of devoted, talented volunteers. So far, LAMN has raised $10,000 for MD research.
Life for Burcaw has taken many fruitful twists. While he blogs about everything from finding love to putting the word out for an ice rink that will allow him to take a spin with his wheelchair, Burcaw is candid about the reality of his disease.
In 2013, he appeared on Katie Couric’s show, Katie, and spoke about how others are quick to judge the disabled.
The same year, he won a Mid-Atlantic Emmy as a producer for Happiness is Always an Option, a video about his life by FireRock Productions.
“We had an idea for a video and needed someone to film it and to make it look beautiful,” says Burcaw, adding, “At the time, we were a young nonprofit, and they did it pro bono. We worked together with them.
“We are most devoted to research on muscular dystrophy,” observes the determined resident of Bethlehem, Pennsylvania, who was named Person of the Year by a regional magazine this spring. “Much in research has been accomplished even since I was born.”
As a worldwide phenomenon and witty warrior for his cause, Burcaw can also be forthright about his terrifying condition. He spells out clearly in several of his videos what life will be like as his condition worsens. That progression is documented in his upcoming memoir, a project conceived in one of his English classes at Moravian College.
“Last October, I had a crazy experience. As my blog got more popular, more and more people said, ‘You have to write a book,’ and although I was an English major at Moravian, I realized I needed help to do this the right way. One of my professors, Dr. Joyce Hinnefeld, helped a great deal. I sent out 25 agent query letters and book proposals. I received four responses the very next day, with major literary agencies wanting to represent me,” recalls Burcaw of the process and the surprising response.
He chose Macmillan Publishers’ Roaring Brook Press as the best fit, and his first book, Laughing at My Nightmare, will be available in October.
While it’s too early for his book-signing schedule to be finalized, Burcaw is slated for an appearance Oct. 18 at Barnes & Noble, The Promenade Shops, Center Valley.
The book is also expected to be picked up internationally, and Burcaw already has a publishing deal in Norway. He says he joked with his publishers, “How are we supposed to know the translation is accurate?”
“We really want to donate to research; that is the most important thing to us right now,” he says. “There is great hope in knowing how fast research is advancing. The amount of progress is great. At the time I was born, the causes of muscular dystrophy were unknown. Today, researchers have been able to link the causes to chromosomes or lack thereof. They have even arrived at various cures, but now, research is determining the best way to deliver the cures.”
While LAMN’s fundraising efforts target research, the message on the website and blog clearly inspires those facing adversity.
“Humor and your point of view are all we really have control over,” Burcaw concludes.
LAMN promotes the message of positivity with laughter and an optimistic attitude. Continue to read Burcaw’s blog, and follow him every step of the way.