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MDA Announces 2026 National Ambassador Lily Sander Following Landmark Years of National Advocacy

Lily Sander will commence her second year as MDA National Ambassador by speaking at the largest global gathering of the neuromuscular community on March 9 at the 2026 MDA Clinical & Scientific Conference and presenting the 2026 MDA Donavon Decker Community Impact in Research Award.

New York, Tuesday, January 20, 2026 – The Muscular Dystrophy Association (MDA) today announced that Lily Sander will continue her role as the 2026 MDA National Ambassador, following years of powerful advocacy, connection, and community leadership that made her a standout voice for people living with neuromuscular disease. The MDA is grateful to Ira Walker, who concludes his term as MDA National Ambassador after an impactful two years of service. Both Lily and Ira have contributed as authors for MDA’s Quest Media, and were recent guests on MDA’s Quest Podcast here. Learn more about MDA’s Ambassador program here.

“I’m incredibly honored to continue as the MDA National Ambassador for a second year. 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,” said Lily Sander, 2026 MDA National Ambassador.

Lily, who lives with Charcot-Marie-Tooth (CMT) disease, first connected with the organization through MDA Summer Camp, describing it as the moment she “found her people.” The friendships she made and the confidence she gained helped shape her path as an advocate — a role she embraced nationally in 2025 as she spoke at events across the country, met with lawmakers on Capitol Hill, and encouraged new families entering the MDA community to share their stories. She will deliver remarks at the 2026 MDA Clinical & Scientific Conference on March 9; the largest global gathering focused on neuromuscular disease research and care.

Throughout 2026, Lily will continue speaking and traveling on behalf of the organization, meeting and connecting with families, partners, advocates, and supporters while amplifying the stories of people living with neuromuscular diseases. Her work will span national events, media engagements, advocacy initiatives, and community outreach as MDA builds on more than 75 years of accelerating progress and moving forward together as a community.

Watch her recent advocacy campaign video in support of NIH research funding here.

“Lily and Ira have each shown how powerful it is when people share their story. From MDA Summer Camp to Capitol Hill, they create spaces where people feel valued and supported, helping our whole community grow stronger, more connected, and more empowered. We are honored to support Lily as she continues her incredible work in 2026, and we are deeply grateful to Ira for the contagious energy and joy he brought to his role,” said Alicia Dobosz, MDA’s Executive Vice President of Community Engagement.

Ira, who lives with spinal muscular atrophy (SMA), spent the past years championing accessibility and inclusion, often using humor, cooking skills, and storytelling to bring attention to the needs of families living with neuromuscular conditions. He represented MDA at events across the country — from IAFF fire stations during Fill the Boot, to NALC letter carriers raising funds in local communities, to CITGO-supported golf tournaments and galas, to Burn Boot Camp’s high-energy member fundraisers, to advocacy meetings during MDA on the Hill, visits with campers at MDA Summer Camp, and authoring stories for MDA’s Quest Media.

“Serving as MDA’s National Ambassador has been one of the greatest honors of my life. I’ve met incredible families, researchers, partners and supporters across the country at galas, golf events, and on Capitol Hill. Working with the MDA Advocacy team to meet with lawmakers and fight for access to healthcare, research funding, education, travel, and more has meant the world to me. I’ll forever be grateful to the Muscular Dystrophy Association for giving me this platform to help raise awareness and inspire hope,” said Ira Walker, who now joins the esteemed group of MDA Alumni National Ambassadors.

Both Lily and Ira played influential roles in MDA’s federal advocacy efforts during its 75th anniversary year, helping ensure that lawmakers understand how policy decisions affect access to research, care, and independence.

“As MDA National Ambassadors, Lily and Ira represent the neuromuscular community on a national stage while also helping move progress forward for the broader disability community,” said Scott Wiebe, Director of Community Programs at MDA. “They exemplify the very best of our ambassador program — using their lived experience to elevate diverse voices, advance accessibility, and ensure that people with neuromuscular conditions are seen, heard, and included at every level.”

Media contact press@mdausa.org.

About Muscular Dystrophy Association

Muscular Dystrophy Association (MDA) has been at the center of progress for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions for 75 years. We unite researchers, clinicians, advocates, and families to speed the pace of discovery, improve access to expert care, and ensure inclusion in every aspect of life. Our mission is simple: give the people we serve the tools and opportunities to live longer, more independent lives. To learn more visit mda.org. Follow MDA on social media on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube.