For the past seven months, I have been working at the Muscular Dystrophy Association’s National office in Chicago. This is my first job since graduating from college (I attended Illinois State University and graduated with a degree in broadcast journalism in May 2015), and it truly has been an eye opener. For starters, the people I work with are some of the nicest I have ever met. You always hear stories about offices with competitive cultures or know-it-all colleagues, but MDA doesn’t have that. Everyone is helpful, supportive and on the same team. We all want to see each other succeed while we strive to follow our mission and vision.
This is especially heartening for me, since I have a very personal connection to MDA’s mission. As a person with Spinal Muscular Atrophy Type 2, I’ve been on both sides of the MDA. As a child I attended MDA Summer Camp, went to MDA Care Centers to see specialists, and met supporters and donors at local fundraisers. Now, as an employee, I get to see the behind-the-scenes action. I’m able to see the people who make it all happen, who have their hearts in it, and the dedication that the organization has to grow for kids and adults with muscular dystrophy, ALS and other muscle-debilitating diseases.
To be perfectly honest, before coming to work for MDA, I hadn’t been involved in many years. Growing up, MDA Summer Camp was everything. The anticipation and excitement leading up to those seven days every year completely took over my mind, and the experience of being at camp changed my life. (And to this day I still have the same feeling each year waiting for Horizon Camp, a summer camp program for adults with muscular dystrophies, cerebral palsy and other physical disabilities.) As a kid, camp was a chance to play and be free, a mini-vacation and a break from parents, a time to grow and to be myself, and, most of all, an opportunity to learn.
After I aged out of the MDA Summer Camp program, I felt disconnected from MDA. It seemed like all the counselors I once knew at camp had new campers to take care of and my friends who were still young enough to attend camp were making new friends. I thought going to the clinic was useless because there is no cure for what I have. I felt that MDA wasn’t doing everything they could to benefit me or my future.
Now I know that couldn’t be further from the truth. I started working for MDA toward the end of the work that went into re-launching our brand, and I was able to be a part of a panel on which parents and people with MD got to give their opinions on the new brand logo, mission and vision. During the panel I realized that MDA was aware of the areas it needs to improve on and saw its intent to grow into an organization that people can truly rely on and respect more. MDA is starting to fix the issues it has, gain a new perspective and slowly becoming a stronger outlet for all individuals with MD.
The fact that the organization’s leaders are interested in hearing from people with MD about their hopes, wants and needs of the organization is a great first step. They want and are looking for advice and opinions from people living with muscle-debilitating diseases and their families. I love that I am able to give my opinion from personal experience to better the organization’s outcome. It makes me feel good to know that I am valued both for my past with MDA and my perspective on its future.
I hate to end with a cliché, but Rome wasn’t built in a day. MDA really is growing into an organization that adults and families can believe in. And I’m not just saying these things to make sure I keep my job. No, I hope to grow with the organization as it grows, and I am glad to have the honor to be able to be behind the scenes as well as be an asset to the transformation this organization has yet to see.
Editor’s note: to learn more about current opportunities at MDA, visit our employment page