Living With

Dear Friends:

Chris Rosa

It’s not likely that you’re reading this letter because you were searching the Web for someone to provide guidance for a student bound for college, or for a die-hard Bruce Springsteen fan in the “E Street Nation.” While we may share those traits in common, what is most likely is that — like me — you have found yourself to be a member of what I refer to as the “BMD Nation.”

When I was 9 years old, I learned I wouldn’t be living out my childhood dreams of playing shortstop for my beloved New York Mets. Instead, I learned I had Becker muscular dystrophy (BMD).

I’m now an adult with many personal and professional accomplishments behind me, and hopefully, many more to come, but when I first turned to MDA in 1976, the path forward was very unclear for my family.

The weeks and months of adjustment that follow a diagnosis of Becker muscular dystrophy differ for every family. In the decades that have passed since I first learned that BMD would be a part of my life’s journey, I’ve had the privilege of meeting many other families within our MDA BMD community. For each of them, their progression and adjustment experiences have varied. But what’s been constant is the shared sense of support they’ve gotten from MDA.

MDA’s community is here for you, both at home and around the world. Through your local MDA clinic, you’ll meet with health care professionals who are experts in muscle disease. Your local MDA office can help you access valuable community resources and stay in touch with other families and local events. MDA’s publications and online communities connect you with resources, world-renowned experts, and BMD-ers worldwide, while its advocacy program helps your voice be heard.

Most importantly, MDA-supported researchers are at the forefront of Becker muscular dystrophy research and are helping to drive the exciting progress being made in this disease.

The information that you’ll find on these BMD Web pages is designed to help you better understand its causes, symptoms, progression and care. Truly, knowledge is power, and the more you understand about this diagnosis, the more effectively you’ll be able to plan for a meaningful, productive future.

A BMD diagnosis means the future may look a little different than you had envisioned – but believe me, it is still full of promise.

For example, I’m University Dean for Student Affairs at the City University of New York (CUNY). Among my many activities are teaching, coaching basketball for Catholic Youth Organization, and serving on federal and state disability commissions. My younger brother, Gian, who also has Becker muscular dystrophy, is also a higher education professional.

Today, there are more opportunities than ever for people with disabilities to develop and use their abilities. Federal law guarantees a public education, equal employment opportunity and access to public places, while computers and other technology make life ever more accessible.

As you go forward in your journey with BMD, always remember that MDA is here to help — from medical care to summer camps to support groups to advocacy to the great hope of today’s BMD research. You are not alone.

Chris Rosa, Ph.D.
Flushing, N.Y.
MDA National Task Force on Public Awareness
MDA National Board of Directors

To view a presentation by Chris Rosa, see the August 2012 video Transitional Freedom: From Consciousness to Culture to Comprehensive Care.