Marissa Penrod is the CEO of Team Joseph and mom to 10-year-old Joseph, who was diagnosed with Duchenne muscular dystrophy. Duchenne is a disease that causes muscular degeneration, and there is currently no cure. Team Joseph has been chosen as the primary beneficiary for Northwestern University Dance Marathon 2014.
Why start Team Joseph?
My son Joseph was diagnosed with Duchenne muscular dystrophy five years ago. When we received the diagnosis it was devastating and very scary. I gave myself a few days to feel sorry for myself and cry. But then I realized that wasn’t helping Joseph, and all I wanted to do was help Joseph. We decided to be laser beam focused on research that would lead to a cure.
What was your experience applying to be a Dance Marathon beneficiary?
One of the reasons we were drawn to DM was that our philosophies were parallel. It’s been a great wakeup call to live in the moment and have fun every day. It is exciting to work for an organization that can do good and have fun at the same time. The process was wonderful. It was a gift to have a forum to tell people about Duchenne and show the urgency.
Can you describe the moment you learned Team Joseph had been chosen?
Finding out was one of the best moments of my life. It showed me people understand the urgency of Duchenne and how devastating it is. It’s incredibly inspiring. Also, Joseph is a huge music fan, so anything involving music and dancing will be wonderful.
What are you most looking forward to in the coming year?
I’m looking forward to the Heroes Program. The fact that Dance Marathon wants to connect with these boys and their families, it’s a gift. We are going to work to create a strong Heroes Program.
What should people know about Team Joseph?
We’re so motivated. It’s a devastating disease, but we have great hope. We are closer than ever to a cure, and we need to put in maximum effort. The impact of Dance Marathon and the Northwestern community will be lasting and profound. We have the chance to make a legacy for not only Joseph’s generation of boys with the disease, but the next.