My Little Speech

Every now and then, I get to go to MDA events and visit with the participants and volunteers, and every now and then, I get to give a speech. Below is a recent speech from a TELU fundraiser that I wanted to share (slightly modified to not include my name so people can’t stalk me). Enjoy!

I’m a 29-year-old from Brooklyn Park. I have Spinal Muscular Atrophy, also known as SMA. I also have a 32-year-old brother with SMA. By the time I was born, my brother had already been diagnosed and my family was already involved with MDA. Essentially, I was born into the MDA family.

Family…that’s really what MDA is to the people they serve. Whether it’s the awesome office staff working countless hours on fundraising and support services or the doctors and specialists working tiredlessly caring for patients at the clinic and conducting research in the lab, they are always there to answer your questions, help you find resources or to just support you…just like any family member would.

One of the most important things MDA did for me while I was growing up was give me the opportunity to have the time of my life at summer camp. Camp gave me the opportunity to participate in activities that I normally wouldn’t get to do at home, such as swimming, horsebacking riding or doing some really awesome but sometimes disgusting science experiments with a scientist from 3M. Camp gave me the opportunity to spend the week with kids who were just like me, where I didn’t standout because I was in a wheelchair and where there were no physical obstacles. I was just me. Everything at camp was planned to meet my abilities and when I did need help with an activity, there was always a really cool volunteer there for me. I made many great friends whom I’m still friends with today, including my very first camp volunteer 21 years ago. She and her family quickly became like family to me and are still very dear to me today.

Camp wasn’t just special to me. It was for my parents, too. It gave them a much needed and deserved break, as caring for a child with MD is a never-ending job. For a week they put their faith and trust in the wonderful camp staff, excellent nurses and generous volunteers, so they could have a week to themselves to relax and do things they wanted to do, for themselves. My parents even went on vacation, by themselves, for the first time in years. They knew I was in good hands and that they would come to pick me up from camp at the end of the week refusing to go home.

Now that I’m older, I have the honor and privilege of being a volunteer staff member. This summer was my 8th year on staff. It is truly a rewarding experience to see the kids smiling, laughing, having fun and making friends and memories that I know will stay with them forever just as they have with me. I know firsthand just how important and how special that week is to them and their families, and being able to be a part of making that week possible for them is a wonderful feeling. We have the best group of campers and volunteers that anyone could ask for, and they are what make it the fun and rewarding experience it is. They are truly an inspiring group of people and I always come home feeling refreshed. Our campers will tell you that for them it’s the best week of the year. Our volunteers would echo that same sentiment. I wouldn’t trade the week and experience for anything in the world, not even a tropical vacation, and I look forward to reaching the 20 and 30 year milestones of volunteering at camp just like a number of our volunteers already have.

Thank you for giving up your time to support MDA and the families they serve by being here today. You are truly making a difference and having an impact on people’s lives much more than you know.