At Kennedy Krieger, we pride ourselves on “unlocking the potential” of children with special needs. It’s easy to visualize the meaning of this for a child with a developmental disability, who might learn new skills and walk or talk for the first time with the help of the team here. Still, when I first came to Kennedy Krieger to launch a center for muscular dystrophy, it wasn’t immediately clear to me what “unlocking potential” meant for the children and young adults in my care. After all, muscular dystrophy is a degenerative condition where children are born with normal function, but slowly lose strength and skills over time.
That was until I met Ben.
For Ben Cumbo, a diagnosis of Duchenne muscular dystrophy (DMD) meant a future in the spotlight – literally. As a National Goodwill Ambassador for the Muscular Dystrophy Association (MDA), Ben and his parents traveled around the country to raise awareness and funds. In fact, you may remember Ben spontaneously showing off his dance moves on national TV alongside comedian Jerry Lewis during the 1997 MDA Telethon. It was only a few years later that DMD finally robbed Ben of his ability to dance.
Once you get to know Ben, you realize that DMD hasn’t robbed him of much else. At age 10, he designed adaptive monkey bars for kids with disabilities. At age 13, he testified before the Senate Appropriations Committee to request funding for muscular dystrophy research, where he cheekily pointed out that if billions could be spent on military planes, a few million to help children like him couldn’t be that hard, could it? At age 19, he nabbed an internship in the office of then Senator Barack Obama and was swept into a presidential campaign. At age 21, he published a novel, King Me!, about the ethical dilemmas that we face as humans. Now age 23, and a graduate student at George Washington University, Ben is working for the Department of State.
The stark reality is that Duchenne muscular dystrophy is a deadly condition. For that reason, it is often easy to encourage boys with Duchenne to “live in the moment,” rather than make plans for an uncertain future. But Ben has more triumphs and accomplishments to his name than most able-bodied individuals. He refuses to be held back by fear or sadness. In an interview with NBC not too long ago, Ben said, “Everybody is scared but sometimes you gotta just learn to saddle up for the ride…fear is something to be conquered and if anything deserves to be conquered in this life, it is fear.”
Ben doesn’t fear his disease, and he also hasn’t given up on conquering it. When we launched a new clinical trial to investigate a heart disease treatment for Duchenne, he was among the first to join.
We are making great strides in developing therapies for muscular dystrophy that I believe should give families a real sense of hope for the future, but we’re not there yet. Ben’s commitment to research, and to his own future, fuels my drive to continue our work at a rapid pace so we can give all of the boys and young men with DMD the opportunity to live life to the fullest.
Kathryn Wagner, M.D., Ph.D., is Director of the Center for Genetic Muscle Disorders at Kennedy Krieger.