Caregiver and Advocate for DMD
Broadview Heights, Ohio, United States
I am Brian Wolf. My oldest, Jack, has Duchenne. My other son, Mark, and my daughter, Amanda, are not affected. My wife, Karen, and I learned about Jack’s diagnosis when he was 5. Since then we have been working toward a cure or therapy while doing our best to make sure Jack can do everything he wants to in life.
I work at AT&T in the Unix Security Patch Governance organization. My second job is being a ward council representative for Broadview Heights—yes, an elected official. We are involved in so many non-profits, it’s hard to list them all. Some of them include: Muscular Dystrophy Association, WAGS 4 Kids, Challenger Baseball, CureDuchenne, Parent Project Muscular Dystrophy, and Make A Wish.
Both of my sons are Eagle Scouts (as am I) and we are very involved in the scouting organization—Boy Scouts and Venture Scouts. We have all been camping at summer camp, various weekend campouts, and most recently the 20th anniversary of Venturing at the Venturing Fest held at Summit Bechtel Reserve in West Virginia. Jack rode the zip line, shot a shotgun and handgun, and fished at camp with some assistance from the staff.
Jack is learning how to drive so he can commute to the University of Akron in the fall to study Marketing. There’s no stopping him.
Karen and I make sure we provide the means for Jack (and all our kids) to do what he wants—what he does with that is up to him. He wanted to continue to play his instrument after middle school and march with the high school marching band. We made it happen by adding a controller to his wheelchair and I created a holder for his instrument. He played during halftime shows, parades, and even played at the OSU Horseshoe in Columbus. We have been told what an inspiration he has been for others by overcoming obstacles to do what he loves. I say we are just doing what we are supposed to be doing for him.
Looking forward to what this new platform brings to the Duchenne community.