New York, Jan. 27, 2025 (GLOBE NEWSWIRE) — The Muscular Dystrophy Association (MDA) has selected Lily Sander from Charlotte, North Carolina, as its 2025 MDA National Ambassador. Sander joins MDA National Ambassador Ira Walker from Fort Lauderdale, Florida, who continues his second year representing the organization in this role. As MDA National Ambassador, Sander will participate in MDA events across the United States, raising awareness of the need for critical funding to support innovative research and care, and advocating for MDA’s legislative priorities.
At the age of four, Lily was diagnosed with Charcot-Marie-Tooth disease (CMT), a hereditary neurological disorder affecting the peripheral nerves that control muscle movement and sensation. CMT leads to progressive muscle weakness, atrophy, and sensory loss, impacting areas such as the hands and feet. Symptoms of CMT typically appear in childhood or early adulthood. In total, mutations in over 100 known genes can cause different forms of CMT. While there is currently no cure and no treatments, pain medications and physical therapy help manage and improve quality of life. As the new MDA National Ambassador, Lily will share her story to raise awareness about CMT and inspire others living with neuromuscular diseases.
“As an MDA National Ambassador, I’m honored to support the Muscular Dystrophy Association’s mission to empower people living with neuromuscular diseases,” said Sander. “My biggest goal in this role is to help build a stronger sense of community and support for families like mine who are living with neuromuscular disease. Too often, disability is seen as a tragedy, but I want to show the world the joy, resilience, and incredible potential that thrives within the disability community.” Sander was also inspired from her participation in MDA’s recreational and advocacy programming. “MDA Summer Camp was a life-changing experience for me. When I was eight years old, spending a week at Camp was the first time I felt truly understood and supported. Connecting with peers who shared my experiences made me feel seen and helped me realize I wasn’t alone. That feeling has stayed with me ever since. Looking ahead, I plan to attend a four-year college, focusing on law and social sciences, so I can continue my work in disability advocacy and make an even bigger impact as an adult.”
Watch Video Messages from MDA National Ambassadors
About Lily Sander
Living with a neuromuscular disease has shaped Sander’s inspiring journey as an advocate for inclusion and empowerment. Her involvement with the Muscular Dystrophy Association began at a young age, including her cherished experiences at MDA Summer Camp. The camp program has been instrumental in fostering her independence, confidence, and sense of belonging in a supportive community. She also actively supports MDA’s partnerships, such as Burn Boot Camp, which raises funds and awareness for MDA’s mission to empower people with neuromuscular diseases to live longer, more independent lives. Sander, a junior in high school has a passion for helping others and serves as a tutor for children in grades K-8 in math and English. She also enjoys talking to parents of children living with disabilities to share her perspective and is looking forward to diving into the college application process to pursue her future higher education goals. Sander has participated in the MDA collaboration with Celestial for a drone show called “Humble Courage” and joined her U.S. Representative in casting a vote on the House floor during MDA on the Hill, further demonstrating her commitment to advocacy and inclusion. Lily attends an MDA Care Center, where she receives essential multidisciplinary care to support her health and well-being. Throughout her journey, she maintains close family support, cherishing the bond she shares with her siblings and parents. Through her advocacy, she aims to inspire others to embrace the joy and strength within the disability community while working to create a more inclusive world.
About the MDA National Ambassador Program
For 75 years, MDA has worked with nearly 50 National Ambassadors who have shared their stories to raise awareness of the urgent need to fund research for treatments and cures for neuromuscular diseases. They have traveled the nation to meet with partners, volunteers, supporters, and luminaries including U.S. presidents, and have gained national exposure across social media channels and national media. Former youth ambassadors have grown up to achieve distinction, transitioning into adulthood, earning advanced degrees, and making their marks as authors, educators, bloggers, musicians, artists, and successful business professionals.
“We are ecstatic to welcome Lily as our newest MDA National Ambassador and are grateful to have her share her story to help raise awareness while showing strength and resiliency,” said Scott Wiebe, Director, Community Programs, MDA. “Lily has been a dedicated ambassador, representing MDA with distinction and embodying what it means to live with a disability while looking forward to an incredibly bright future. Lily joins the ranks of MDA National Ambassadors, an integral role in furthering the mission of the Muscular Dystrophy Association to accelerate research, advance care, and empower the families we serve through their unique voices and perspectives. They passionately share their true personal viewpoint to raise awareness across the entire MDA community.”
Walker is looking forward to continuing in the role of MDA National Ambassador for his second year, building on the relationships he has made within the community and with the partners who support the mission.
“Entering my second year as an MDA National Ambassador, I’ve embraced the mission to inspire, uplift, and encourage people living with neuromuscular conditions to pursue independence, self-fulfillment, and the best versions of themselves,” said Walker. “I strive to achieve this by being a positive example, sharing my life authentically, and demonstrating how, despite challenges and adversity, one can persevere and thrive. It’s an honor that fills me with gratitude and humility to continue this role and contribute to MDA’s mission – and I’m proud to welcome Lily to this role, and work alongside her to raise awareness for our community.”
MDA extends its heartfelt gratitude to Leah Zelaya and her family for their invaluable contributions during her tenure as MDA National Ambassador from 2023 through 2024. A resident of the New York City Metro area, Leah lives with an ultra-rare form of neuromuscular disease called scapuloperoneal spinal muscular atrophy (SPSMA). Over the past two years, Leah has raised awareness, advocated tirelessly, and exemplified MDA’s mission with grace and determination. Her impactful efforts included attending key events such as MDA on the Hill in Washington, D.C. and boosting MDA’s visibility through sponsor and media appearances.
Additional Background
Listen to the Quest Podcast featuring a recap with MDA National Ambassador, Ira Walker, with Alumni MDA National Ambassador Leah Zelaya here.
About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 related neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA’s mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, TikTok, LinkedIn, and YouTube.
About Muscular Dystrophy Association’s 75th Anniversary
In 2025, the Muscular Dystrophy Association proudly marks 75 years of legacy, impact and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors—who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building on the impact we’ve made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders.
- 2025 MDA National Ambassador, Lily Sander
