Challenging the World to Raise Awareness about Chromosome Disorders

Grassroots organizers often turn to Causes.com to raise awareness around a specific problem that they’re inspired to solve. 17-year-old Causes leader Matt Millsaps discovered his inspiration in the Fall of 2007 when his brother was born prematurely and suffering from chromosome disorders. Since the age of 13, Matt has made it his life’s work to spread awareness about chromosome disorders and their debilitating nature, and he has gathered a group of 250 members to spread his message far and wide. Last week, Matt was kind enough to chat with us about his brother’s story, his personal mission, and their plans for the future.

Matt told us he’s always been a leader, but nothing could have prepared him for the day his brother was born. “A month before he was due, my mom began suffering complications. [My brother] had lost considerable weight. She was rushed to the hospital and had an emergency C-section.” Mason, nicknamed by his dear brother as “Noody,” (short for Noodles) suffered cardiac arrest, but survived. The emotional toll for Matt and his family was almost unbearable. “I was a complete wreck. When they brought him in this plexi-glass box with tubes, I immediately ran out of the room.”

Mason was in a prenatal intensive care unit for a month and his brother Matt wasn’t allowed to see him. As the days progressed, Matt realized he wanted to learn everything he could about his brother’s illnesses. One profound fact about his brother propelled him into action. “My brother has a chromosomal disorder in chromosome 4, 18, 22. Doctors told us no one in the world born with this same disorder has survived so, you know, it makes him really special.” As Mason’s doctors began genetic work intended to pinpoint his symptoms, Matt began his search for more information.

On March 5, 2011, Matt created Cup of Noody, a resource site for people looking for information about chromosome disorders. “When my brother was born, I essentially saw a problem and I physically felt like it was my duty to help.” Over time, his website became a focal point for people seeking support, answers, and a community to invest in. Most importantly, Matt’s social media campaigns, including his community on Causes, became his vehicle for success. “If I could get everyone in the world to be in one room, I would tell them about my brother and other disorders. But, that is obviously humanly impossible. Instead, I blog on the internet, which is the closest thing we have as a giant room for us all.”

At 17, Matt has his sights set on a big fish: he wants to tell his story on Anderson Cooper or The Ellen Degeneres Show. It’s a monumental goal that Matt feels is achievable because his vision for the future is crystal clear. “When I get out of high school and go to college, I’m going to study business and nonprofit management, and this is what I am going to do for the rest of my life.”