MDA Ambassador Guest Blog: Why I am Speaking Up for Our Community at MDA Hill Day

Faith is 14 years old and lives in Texas. She is a freshman in high school. Faith served as the MDA National Ambassador in 2018 and 2019. She is currently serving as her Freshman Class President. Faith loves the time she has spent at MDA Summer Camp, and in her spare time she loves to hang with friends, watch college football, and bake.

Faith in front of the Washington Monument.

This year I am going to be part of MDA Hill Day, and I think it’s an important opportunity. Hill Day is when people from the MDA community meet with lawmakers in Washington, D.C. to talk about what matters to us. It’s a way to make sure our voices are included when decisions are made about healthcare, research, accessibility, and other things that impact people living with neuromuscular diseases.

Sometimes I think people don’t realize how much our voices actually matter—especially people with disabilities. That’s why this is so important, so lawmakers can really see and understand us! When they hear directly from people like me, it makes a difference in how they understand the challenges we face and the changes we need.

I’m glad that I have the opportunity to do this because advocacy is something I’ve learned to value. Over time, I’ve realized that using your voice is one of the strongest ways to create change. Even small actions can make a big impact, and I’ve learned that when you share your story honestly, people listen.

Speaking up at school

Faith at the US Capitol.

One way I’ve practiced using my voice is at school. This year, I ran for Class President of my freshman class and was elected. I didn’t run just for the title – I wanted to represent my classmates and make a difference. Being Class President has shown me that people listen when you speak up and lead. It taught me that my ideas can matter not just for me, but for everyone I’m representing.

That experience is part of what makes me feel ready for Hill Day. If I can represent my class at school, I can also represent my community in conversations with lawmakers. Running for President helped me realize that leadership isn’t just about giving speeches or making decisions – it’s about making sure people feel heard and included. Even small actions, like asking for input or listening to suggestions, make a difference.

Lessons from MDA Summer Camp

MDA Summer Camp has also been a big part of how I’ve grown as a leader. Camp is fun, but it’s also where I’ve learned how powerful it is when people share their stories. I’ve talked with friends about what we go through, and I’ve seen how those conversations build connection and strength.

Faith headed to MDA Summer Camp.

Camp showed me that our voices matter not just for ourselves but for each other. That’s a lesson I want to carry into Hill Day – because when I speak up, I’m not only sharing my story, I’m sharing the voices of the larger MDA community. Seeing other people speak about their experiences also motivates me to speak clearly and honestly. It reminds me that advocacy is not just about asking for help, but about showing the world what life is really like.

Why advocacy matters

Advocacy matters because lawmakers don’t always know what it’s like to live with a disability. They might make decisions without realizing how much those decisions impact people like me, my friends, and my family. Speaking up gives them a chance to hear from us directly.

But advocacy isn’t only about Congress. It happens every day, in smaller ways – like standing up for what’s fair, not being afraid to stand up for yourself, and not being scared to use your voice for what you need help with. Those everyday moments prepare us for bigger opportunities like Hill Day. I’ve noticed that every time I speak up, even in small ways, I feel more confident and more capable of handling bigger challenges.

What I want to share

At Hill Day, I want to make sure lawmakers understand that people with disabilities have goals, dreams, and plans for the future. Their choices – whether about research, funding, or accessibility – play a role in helping us reach those goals. I also want them to understand that living with a disability doesn’t mean we don’t have big ambitions. We want to go to college, have careers, travel, and live full lives just like anyone else, and the right support makes that possible.

I also want to show others that everyone can be an advocate. People in our community live these experiences every day, and our voices should be part of the conversation. Even if we’re not the ones passing laws, we can help lawmakers understand the real-life impact of their decisions.

Looking ahead

Faith with MDA Summer Camp volunteers.

I’m looking forward to Hill Day because it’s a chance to represent more than just myself. It’s an opportunity to stand up for everyone in our community. My experiences have taught me that using your voice can make a difference. Every story matters, and even small details about our daily lives can help people understand what we need.

Hill Day is about being honest, sharing your story, and making sure people in power actually hear what matters to us. I’m ready to be part of those important conversations and to keep learning how to use my voice to create change.