Florida's MDA State Ambassador: The Gala, the Muscle Walk, and Camp
August 2, 2019 | Leadership & Advocacy
The Muscular Dystrophy Association has a slogan that I have heard hundreds of times by now, and it still holds up: Make a Muscle, Make a Difference. For a lot of people that line is a nice piece of marketing. For me it has always been a little more literal than that, because I have a neuromuscular disease myself, and the muscles the MDA talks about are the same ones I have spent my whole life negotiating with. Looking back at the last few years of work I did with them, from being named Florida State Ambassador for 2018 to speaking at the Toast to Life Gala and walking in the Muscle Walk, I wanted to write some of it down before the details get fuzzy.
Becoming the Florida State Ambassador
In December 2017 the MDA announced that it had chosen me as its official Florida State Ambassador for 2018. I was a teenager at the time, and I genuinely did not understand the size of what I was being handed until I was standing in front of my first crowd. Being the ambassador meant that I represented the organization across the state, showing up at events and giving speeches and basically being a face that families could look at and see themselves in. The whole point was that I was not speaking about the cause from the outside, I was living inside it.
That made the job easier and harder at the same time. Easier because I never had to fake the conviction, since the people the MDA helps are people like me. Harder because there were days when talking about muscle disease in front of a room meant talking about my own body in front of strangers, which is a strange thing to ask of anyone, let alone a kid. I did it anyway, and I am proud of that version of myself for showing up.
My First Big Speech
Before the ambassador title ever came my way, in late October 2017 I was asked to speak at the MDA Annual Toast to Life Gala, a black-tie night in downtown Jacksonville. There were more than 700 people in that room, all of them there to donate and to support people living with muscle diseases. I had spoken in front of groups before, but never anything like that, and never about something so personal. The photo at the top of this page is me and my little brother goofing off in a selfie that same night.
That single night raised over $100,000, and my speech apparently hit hard enough that even the firefighters in the room were crying. I am not telling you that to brag, I am telling you because it taught me something I have leaned on ever since: people who fund this work do not want a polished pitch, they want to feel connected to the kids they are helping. My job was not to be impressive, it was to be honest about my own life, and once I understood that, the nerves got a lot quieter. It turned into one of the most remarkable nights I have had connecting with my community.
The Muscle Walk
In April 2019 I took part in the MDA Muscle Walk at the University of North Florida. The Muscle Walk is exactly what it sounds like, a community coming together to move and to raise money, and that particular event brought in over $165,000. Numbers like that can start to feel abstract, but I always tried to remember what they actually buy, which is research, equipment, and support for families who are often stretched thin. My whole family showed up and walked as a team in matching shirts, and I covered the course on my scooter, which I may have driven a little faster than strictly necessary. Standing in a crowd that size, watching people show up for a cause that lives in my own body, was one of the better feelings I got out of this whole stretch of my life.
Camp, Which Is Better Than Christmas
If you ask me to name the single best part of being involved with the MDA, it is not a speech or a gala or even the fundraising totals. It is camp. For years now, including 2017, 2018, and 2019 and a few summers before that, I have gone to MDA Summer Camp, which is a week each summer where kids with muscle diseases of all kinds come together for fun and freedom. I have told people for years that it is better than Christmas, and I am not exaggerating to make a point. I mean it literally, and I have meant it every single summer.
Camp is run by volunteer counselors who give up a week of their own lives so that a bunch of kids can have a week of pure freedom. For me it was friendship and happiness and the rare experience of being somewhere designed around how my body actually works instead of against it. What surprised me, the older I got, was that watching other kids get that same week meant just as much to me as living it myself. There is something about seeing a kid realize that for one week nothing is off-limits that stays with you long after the summer ends.
Where the Money Actually Goes
Over my years of fundraising and advocacy I helped raise well into the hundreds of thousands of dollars for the MDA, including over one hundred thousand during my single year as Florida State Ambassador. I want to be honest and modest about that, because the totals were never mine alone. I did not write the checks, and a room full of generous people did the actual giving. The number only matters because of where it goes. MDA money funds research toward real treatments and cures for muscular dystrophy and the other neuromuscular diseases, it pays for the clinics, equipment, and support that families lean on, and it keeps programs like the summer camp running. So when I say I helped raise a few hundred thousand dollars, what I actually mean is more research, more support for families like mine, and more weeks of camp for kids who needed them.
Looking back at all of it now, I am mostly just grateful. Grateful that an organization built around the exact thing that makes my life harder turned out to be the place where I felt most useful and most at home. The MDA asked me to make a muscle and make a difference, and even on the years when my muscles were not cooperating, I think the second half of that worked out fine.
Written by Ryleigh Newman