Fewer than 20,000 people in the United States are diagnosed with Guillain-Barre syndrome each year. In March 2017, the rare autoimmune disorder partially paralyzed Dominic Cicconi for three months. But instead of just moving on after his full recovery, Cicconi dedicated himself to helping others affected by neuromuscular diseases.
Cicconi, a third-year in mechanical engineering, founded the first collegiate chapter of the Muscle Movement Foundation in October, a national organization based in Wilmington, Delaware, that supports people affected by neuromuscular disease financially, physically and emotionally. The Ohio State chapter expects to raise $2,500 by the end of its first year.
One year ago, Cicconi started experiencing flu-like symptoms that quickly developed into difficulty moving his body and face, as well as double vision. During spring break, he visited a hospital at home and after extensive testing was diagnosed with Guillain-Barre syndrome.
The disease begins with a normal sickness like the flu, but later causes the body’s immune system to attack its own nervous system. Cicconi said the only treatment was to inject proteins into his body to distract his immune system and wait for the illness to run its course.
There was a chance that his syndrome could affect his diaphragm — the muscles that control the lungs — and become life-threatening. Luckily, his symptoms did not progress that far. After five stressful days in the hospital, Cicconi went home to begin his difficult recovery.
“I remember the first couple days out of the hospital my mom basically had to hold a belt around my waist to keep me steady while I was trying to move, and I had [paralysis of half the face] so I couldn’t eat food that well,” Cicconi said. “Simple things like trying to button my pants or tie my shoes I couldn’t do. My brain would be like I want to do this, but I physically couldn’t.”
Cicconi returned to Ohio State after missing about a month of class to finish out the semester. He said returning to class while still recovering and undergoing extensive physical therapy was difficult, but he had support from friends and faculty. He also made the Dean’s List.
While in his home state of Delaware for the summer, Cicconi met Muscle Movement Foundation’s founder Rob DeMasi at his younger brother’s baseball game. His brother’s team raised money for DeMasi’s foundation, so he gave a speech that resonated with Cicconi.
Cicconi and DeMasi decided to work together over the summer to launch an MMF student organization at Ohio State.
“I was fortunate enough where my illness, relative to some of the ones that we support, was not very severe and I was inspired to help people that will never recover. Thankfully, I can play sports, walk and tie my shoes again but going just three weeks without being able to do those things not only has physical effects, but stresses you emotionally and mentally, having those abilities stripped away from you,” Cicconi said. “I can’t imagine what people that have that permanently go through, so I was like I really want to delve into this head-on and try to make a difference.”
Back at school in the fall, Cicconi started recruiting members by reaching out to friends and members of other student organizations he belongs to and using social media. Thirty people signed up immediately.
“I reached out to my closer friends because they had firsthand experience with what I was going through,” Cicconi said. “They helped basically take care of me so they were pretty passionate about the cause as well, even though they didn’t directly experience [neuromuscular disease].”
Will Giessler, a third-year in international studies and Cicconi’s former roommate, said he was excited about the opportunity to join MMF and serve as the vice president of finance and accountability.
“I appreciate that he decided to try to turn his experience into something positive and help others that are going through that, so that’s been cool and I’ve given all I can to help him,” Giessler said.
The organization focuses much of its efforts on raising money for MMF’s current muscle champions, people affected by severe neuromuscular diseases that MMF selects and supports.
So far, they have raised money by hosting fundraisers around the campus area at popular places such as Blaze and Fourth Street Bar and Grill and hosting a March Madness bracket tournament.
Cicconi said he wants to grow the Ohio State chapter by finding a muscle champion in the Columbus area and making connections with other student organizations that can support the muscle champion not only financially, but emotionally as well. He also wants to increase the presence of the organization and raise more money through other events, including a 5K.
“It has been a pleasure working with him and having him be the founder, having him be the founder and president of the OSU chapter, which I really feel like will turn into a very big and successful club on campus,” DeMasi said. “To see his dedication and motivation has been truly inspiring and he’s been a phenomenal asset to my organization.”