What’s Ahead for Your 2026 National Ambassador

For over 70 years, MDA’s National Ambassadors have been an intrinsic part of championing for our mission to empower people living with neuromuscular disease and increase care, research, and advocacy efforts. Each year, these Ambassadors share their lived experiences, perspectives, and passion to raise awareness and create positive change for our community.

MDA’s 2026 National Ambassador Lily Sander

Lily Sander, an 18-year-old living with Charcot-Marie-Tooth disease (CMT) has already made an undeniable impact, dedicating her time and talents to valuable advocacy efforts and sharing her story and personal life lessons as a 2025 National Ambassador. Lily raised her voice and shared her expertise at conferences, advocacy events, and community events across the country in 2025. She offered intimate insights and advice in her Quest Blog series Life with Lily, sharing her perspectives on the power of representation, the importance of accessing education, advice to parents, and her unwavering passion for advocating for disability rights. As the year drew to a close, Lily and fellow 2025 National Ambassador Ira Walker joined the Quest Podcast to share their experiences and reflections on a monumental year.

Now, as she gears up to embark on her second year in this role as the 2026 MDA National Ambassador, Lily is poised to continue her journey of advocacy, connection, and community leadership. Throughout the year, she will continue to speak on behalf of MDA, meeting and connecting with families, advocates, and supporters while amplifying the stories of people living with neuromuscular disease.

“I’m incredibly honored to continue as the MDA National Ambassador for a second year,” Lily says. “As I get ready to head to college in the fall, advocacy and policy work have become an even bigger part of my life — because I want the next generation of students with neuromuscular conditions to have the access, support, and independence they deserve. I’m excited to keep using my voice to make change and to represent this community that has given me so much.”

We checked in with Lily to learn more about what being a National Ambassador means to her – and what’s in store for the year ahead.

As you continue your role as National Ambassador in 2026, what is the biggest change you hope to help drive for the neuromuscular community?

As I continue my journey in 2026, my primary focus is to advance MDA’s mission of fostering longer, more independent lives for our community. I am particularly driven to empower the next generation of advocates, ensuring young people have the tools and confidence to lead. I am inspired every day by the brilliance and beauty of the neuromuscular disease community, and I hope to empower others to lead with the same authenticity and strength that this community has so generously taught me.

What was the most memorable or impactful moment being an ambassador this past year?

The most impactful part of this year wasn’t a single moment, but the cumulative power of every conversation and connection I’ve made. There is a profound, healing energy in simply being in each other’s presence; realizing that this connection is happening on such a large scale has been the most transformative experience of my year as National Ambassador.

How has living with CMT shaped the kind of advocate you want to be? Was there a moment when you realized you were making a real difference?

Lily advocating for disability rights at the U.S. Capitol

CMT has given me a front-row seat to the challenges of accessibility and the importance of research, shaping me into an advocate who leads with lived experience and an intimate understanding of the struggles of those in the neuromuscular community. Having this deep understanding allows me to more effectively advocate for the change I’d like to see for those living with neuromuscular disease. I realized I was making a real difference, not in one grand moment, but through the quiet, consistent connections made with community members. When someone reaches out to say that seeing my journey helped them feel less alone or more understood, I know that my work is creating the community and healing we all deserve.

When you imagine the future of disability rights, what does success look like to you?

Success looks like a future with groundbreaking medical treatments and cures, paired with a society that truly understands and embraces disability. It looks like universal accessibility and the creation of a world where every individual is empowered to live their life fully, authentically, and without barriers.

As a young advocate, what do you think your generation brings to disability and health equity conversations that others may have missed?

My generation brings a raw authenticity and vulnerability that hasn’t always been present in advocacy. By “pulling back the curtain” on our daily lives and experiences with neuromuscular disease through social media, we’ve moved beyond the status quo to share the real-life human experience. We are masterfully using digital platforms and unique candor to fundraise, build connections, and ensure that our stories are truly understood on our own terms.

For other youth who want to begin their own advocacy journey, what is a good first step if they don’t know where to begin?

The best way to start is to dive in and find your community. Sign up as an MDA Ambassador to connect with a community of like-minded community members. From there, stay active by engaging with blogs and webinars, attending local events, and using your social media platform to amplify our mission; your voice is more powerful than you think!

What issue facing the NMD community feels the most urgent to you right now?

Medicaid and NIH funding are vital to the neuromuscular disease community, providing the essential coverage and research needed to sustain our lives. Medicaid ensures we have access to the daily care and specialized equipment we deserve, while NIH funding drives the medical breakthroughs and treatments that offer hope for the future. Protecting these vital resources is not just a policy issue; it’s about ensuring we can live with the dignity, independence, and health we all deserve.

(Watch Lily’s recent advocacy campaign video in support of NIH research funding here. )

You’re applying to college to study policy and law—what inspired those goals, and how do you see them tying into your work with MDA?

My personal and academic ambitions are the same: to drive systemic change for members of the neuromuscular community. As I look ahead to my professional future, this goal is manifested through law and policy. Living with a physical disability has exposed me to the realities of inaccessibility, funding cuts, and structural barriers that my community faces daily. From a young age, I candidly understood these challenges and felt a deep-seated desire to act. With this goal at the forefront of my mind and work, I am intentional with how I engage with MDA’s advocacy endeavors (such as advocating in DC with MDA On the Hill). Truly learning and better understanding how to make my goal a reality from those doing the work I aspire to do has been essential.

What gives you the most hope about where research and treatments for neuromuscular diseases are heading?

I find the most hope in the unstoppable momentum sparked by our community’s tireless advocacy. We have pushed research to a tipping point where life-changing breakthroughs are no longer just possibilities but are happening now.

What do you want your legacy as National Ambassador to be when you look back years from now?

I want to leave behind a legacy of sincere connection and growth. I want people to see an Ambassador who was always learning, listening, and engaging; someone driven by a genuine desire to give back to the community that has shaped who I am today.