MDA Double Life

As you all know I currently work for the Muscular Dystrophy Association’s National office. I’ve been working here for seven months now and it truly has been an eye opener. For starters, the people I work with are some of the nicest people I have ever met. You always hear stories about offices having the competitive, stuck-up office bitches that think they know everything and are the best, well 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.

As a person with Muscular Dystrophy, I’m able to see both sides of the spectrum. As a child I went to MDA Summer Camp, went to the clinics to see specialists, and attended some of the fundraisers. Now, as an employee, I get to see the background behind it all. 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 the individuals with MD and their families.

Now I know what a lot of you are thinking… that MDA isn’t exactly your favorite organization (for your own personal reasons) and I can honestly say I was in the same boat until working here…

Growing up, MDA Summer Camp was everything. The anticipation that lead to just seven days out of the year completely took over my mind and changed my life (And to this day I still have the same feeling waiting for Horizon camp each year). As a kid, camp was a time to play, to be free, a vacation, a break from parents, a time to grow, to be myself, and most of all camp was a time to learn. After I became too old to go to MDA Summer Camp I felt as if MDA had nothing else to offer me. I felt that all the people I once knew at camp had new campers/friends and that I was just chopped liver once I graduated. I felt that going to the clinic was useless because there is no cure to what I have. I felt that MDA wasn’t doing everything they could to benefit me or my future.

I started working for MDA when the brand launching was first coming into play and was able to be a part of a panel where parents and people with MD got to give their opinion of the new brand logo, mission, and vision. During the panel I realized that MDA is starting to become aware of the things they are doing wrong (well, wrong in my eyes). MDA is growing into an organization that people can truly rely on and respect more. They’re starting to fix the issues they have, gain a new perspective, and slowly becoming a stronger outlet for all individuals with MD.

Part of the problem, I believe, was that there weren’t enough people with MD telling MDA what they were doing wrong. That is currently one of the changes they are making. They want and are looking for advice and opinions from people living with these diseases and their families. I love that I am able to give my opinion from personal experience to better the organizations outcome.

I’d hate to add a cliché… but Rome wasn’t built in a day. MDA really is growing into an organization that adults and families can believe in. I’m not just saying these things to make sure I don’t get fired either… I am just glad to have the honor to be able to be behind the scenes as well as being an asset to the transformation this organization has yet to see.

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