Editor’s note: Earlier this year Jason Morgan, a Washtenaw County commissioner from Ann Arbor, Mich., passed a resolution declaring August Muscular Dystrophy Awareness Month during a ceremony in which the county administration building was lit green, part of an effort started by the mother of a boy with Duchenne muscular dystrophy in Florida working to bring awareness to muscular dystrophy and related diseases. For the occasion, Jason spoke publicly for the first time about his own experience with muscular dystrophy. In honor of Becker Muscular Dystrophy Awareness Month, he graciously shared his remarks with us in the hopes they will continue to inspire others.
Most people who know me are aware that advocating for individuals and families impacted by muscular dystrophy has been a lifelong passion of mine. They know that I spend one week in June every year volunteering at MDA Summer Camp. I’ve been volunteering at the camp since I was 16 years old.
What most people in my life haven’t known, until now, is that my first time at MDA Summer Camp was as a camper. When I was 13 years old, I was diagnosed with Becker muscular dystrophy (BMD).
BMD primarily impacts the arms, legs and the heart, our most important muscle. When I was diagnosed the doctors told me that I would likely lose my ability to walk during my mid-20s. To make matters worse, the average life expectancy for those of us with Becker’s MD is 42 years old. I’m 28 years old now.
When I was diagnosed, I found myself becoming depressed. There were no cures on the horizon, no treatments and nothing I could see to give me any optimism — that is until I attended my first MDA Summer Camp. When I arrived, I thought to myself ‘why am I at this camp?’ By the end of that week, I realized that I had found something. I found hope. I found hope because there were so many others dealing with their own set of challenges and, quite honestly, they were handling it a whole lot better than I was.
I eventually realized that I had a choice to make given my diagnosis. I could choose to give up on my dreams, or I could choose to fight. To fight for what I wanted to do with my life and what I cared about. And what I found is that the one thing that inspires me more than anything else is fighting for other people. This leads me to where I am today.
I have the greatest honor of my life, serving the people of Washtenaw County as a County Commissioner. And it’s because I realized that the point of my life is to help other people and make lives better. The thing that inspires me to wake up every day, even though my muscles are sore each morning when I wake up, is that we as elected officials have the ability to help make people’s lives better.
I don’t see my MD as a disability. If anything, I see it as an inspiration to live every single day as your last. And this is a gift that not many people have. I found this gift when I was 13 years old. I’m sharing my disability with the world now because I believe that now, more than ever, we have reason to hope that there will one day be a cure for muscular dystrophy. And now more than ever, there is a need to increase awareness for muscular dystrophy and the needs of all people with disabilities. I’m also talking about this because there are millions of people living with disabilities in our country who must overcome challenges every day. And one of those challenges is encountering other people and overcoming the preconceptions and stereotypes regarding disabilities.
As possibly the only elected official in the country living with muscular dystrophy, I want to send a message to others that it is still possible to achieve your dreams. If I play even a small part in giving a young person facing a heartbreaking diagnosis some hope, then I have achieved my dreams.
Jason Morgan, who lives with Becker muscular dystrophy, was elected Washtenaw County Commissioner, representing nearly 40,000 residents. He has a bachelor’s degree in political science from Northern Michigan University. Jason has dedicated his life to public service, serving as staff to several members of Congress, the Michigan State Senate and as Director of Government and Community Relations for Washtenaw Community College. He also has been engaged in the community as a volunteer on many nonprofit and community boards and committees. He has been an active volunteer with MDA for nearly a decade, serves on several local nonprofit and community boards, and is a member of MDA’s National Community Advisory Committee.
Help kids and adults like Jason continue to live longer and grow stronger.
