"Finding My Place" - Benjamin Dupree

Tiffany Cook
Benjamin Dupree

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

Last updated Thursday, May 26, 2022