When I was young, I had often wondered why I was slower than other kids on the playground.  At the age of 9, I was given an answer.  After receiving a muscle biopsy, showing a complete lack of the dystrophin protein, I was diagnosed with Duchenne Muscular Dystrophy (DMD).  At the time of my diagnosis, I was happy to finally have my answer, and I took comfort in that.  However, it would take me several years to begin to realize the full extent of what that diagnosis meant to me.

I was a late diagnosis, and my DMD progressed at a slower rate than expected.  When I was 15 and began to transition into full-time wheelchair use, my perspective changed immensely.  I started to see how DMD was beginning to creep into my life and create barriers that kept me from participating in the activities I enjoyed the most.  In the last year of high school, I quit playing in the band because, due to the inaccessibility of many high school football stadiums, I was frequently unable to sit in the stands with the rest of the band.  This was a huge blow to my confidence and left me feeling alone and isolated.

When I reached college, I felt like I was lost.  The feelings I had from the end of my time in high school became magnified, and I felt like I would never fit in with everyone else.  Following my first year in school, at the suggestion of my mother, I traveled with her to a national DMD conference held by Parent Project Muscular Dystrophy (PPMD).  Somehow I found myself speaking on a panel at that conference, and it was a life-changing experience.  Sharing how I dealt with some of the struggles I faced was a fulfilling experience that helped me come to terms with my diagnosis and accept it for what it was.  When I saw how much of an impact my experiences could have on others, I realized that I wanted to work toward a career where I could help others.

DMD has given me one thing that I value more than anything it has taken away from me.  DMD gave me a sense of purpose.  Through my involvement in advocacy, I realized that I could take my experiences and use them to help others through the very same challenges I went through.

I am thankful for being given the opportunity to serve as a Consumer Reviewer for the Duchenne Muscular Dystrophy Research Program and grateful for my nomination by PPMD.  This role has allowed me to share my experience as a person living with DMD in a way that will help to shape the landscape of DMD research in the coming years.

Benjamin Dupree (currently age 26) with the family dog, Mac.