Muscular Dystrophy Association Announces 2023 National Ambassador Leah Zelaya of New York
NEW YORK, NY, January 23, 2023 – The Muscular Dystrophy Association (MDA) has chosen 15-year-old Leah Zelaya of Brooklyn, New York as its 2023 National MDA Ambassador.
Zelaya, who suffers from a rare form of the neuromuscular disorder called scapuloperoneal spinal muscular atrophy (SPSMA), will share her story and raise awareness of the organization’s mission to enable the people it serves to live longer and more independent lives. Zelaya will join current National Ambassador Amy Shinneman, who lives with Bethlem myopathy, to represent families living with neuromuscular disease. As MDA National Ambassador, Zelaya and her family will attend MDA events across the United States to raise awareness of the need for critical funding to support innovative research and care and to advocate for MDA’s legislative priorities.
“My main goal as an ambassador is to encourage and support others living with neuromuscular disorders and their families. By telling my story, I hope to give a different perspective on how the world sees us. I hope to raise enough awareness that others in our community will join our mission to end neuromuscular disease,” said Zelaya. “The Muscular Dystrophy Association has had a tremendous impact on my life. I now feel more confident and comfortable in the knowledge who I am. This organization has given me the answers to my questions about my condition and hope for my future and independence.”
For 70 years, MDA has worked with more than 45 national ambassadors who have shared their stories to raise awareness of the urgent need to fund research into treatments and ultimately cures for neuromuscular disease. They have toured the nation meeting with partners, volunteers, supporters and luminaries including US Presidents and have achieved national notoriety through social media channels and national media.
MDA National Ambassadors play an integral role in motivating the public to support MDA’s mission through donations, advocacy and volunteer activities. Former Youth Ambassadors have come of age to make names, transition into adulthood, earn advanced degrees, and make names for themselves as authors, educators, bloggers, musicians, artists, and successful business people. Their unique voices work with great passion and intelligence to raise the standards of accessibility in travel and access treatments for early intervention through newborn screening, research and care for MDA families and all people with disabilities.
“We are honored to welcome Leah Zelaya as our newest MDA National Ambassador and grateful that she shares her incredible story of strength and empowerment,” said Scott Wiebe, Director, Community Programs, MDA. “Leah and her family are dedicated advocates and advocates for fundraising who have represented MDA with distinction in our ambassador and advocacy programs. live more independently.”
“The Muscular Dystrophy Association has given me purpose and filled a void in my life that had been there for so long. I’ve had so many opportunities with this organization. There are countless ways to get involved and I’ve really enjoyed every one of them,” said Shinneman. “Knowing that so many lives could be changed and so many people could be helped with potential new treatments inspires great passion within me to continue to do whatever I can to help. It’s such an exciting time to be a part of MDA with such promising breakthroughs on the horizon.”
MDA is incredibly grateful for the years of service of Ethan LyBrand, who served as MDA National Ambassador from 2020-2022, and for the support of his family. LyBrand, who lives with Duchenne Muscular Dystrophy, brought joy to the world as he popularized, endorsed and championed the organization’s mission through his Shorty Award-winning series, Joke A Day for MDA, garnering national media and celebrity attention, including He will be featured in a Verizon ad at the Oscars highlighting the MDA Summer Camp and in a feature with actor/comedian Ben Schwartz.
Check out Leah and Amy’s announcement videos:
About Leah Zelaya
Zelaya is 15 years old and lives in Brooklyn, New York with her parents Bevsi and Jaime and two brothers. Her father, Jaime, also lives with muscular dystrophy, and the entire family supports the Muscular Dystrophy Association (MDA). She lives with a rare form of neuromuscular disease called scapuloperoneal spinal muscular atrophy (SPSMA), which causes her muscles to atrophy and limits her ability to walk. She walks with AKFO greaves on both sides and uses crutches or a wheelchair for long distances.
Zelaya is an actress, dancer, model, adaptive athlete and advocate. She has danced with the Dancing Dreams program, which offers dance classes and performance opportunities for children with disabilities, appeared on The Meredith Vieira Show at Lincoln Center, and represented Dancing Dreams at the 39th Annual Salute to Women in Sports Event. A few years ago, Leah discovered her love for adaptive skiing. She also recently joined the Achilles International NYC Chapter Handcycling Team. Leah walked for Lulu Et Gigi at New York Fashion Week and for the Runway of Dreams virtual fashion show. She attended MDA in collaboration with Open Style Lab on adaptive fashion and was featured in Elle magazine. Leah recently made her acting debut in the Universal Pictures film production “Marry Me,” starring Jennifer Lopez, Owen Wilson and Maluma. For several years, Leah and her family have visited our nation’s capital to speak with senators and congressmen on behalf of MDA families living with neuromuscular disease and supporting legislation such as health care reform, genetic counseling, accessible air travel, newborn screening and the Orphan Drugs Act of 1983.
About Amy Shinneman
Shinneman is 48 years old and lives in the Indianapolis area with her husband Jamie and their sons Luke and Jack. Amy lives with a type of muscular dystrophy called Bethlem myopathy. She lived until the age of 44 without a diagnosis, although she had had symptoms of the disease since birth. In 2018, after years of searching, she finally received a diagnosis through genetic testing. During her first year as an MDA National Ambassador, Amy has made many contributions to the organization, including her role as a virtual advisor to MDA’s summer camp for online children, participating in the NYC marathon with MDA’s Team Momentum (with her team Humbly Courageous) and welcoming address at the 2022 MDA Clinical & Scientific Conference. She attended the annual Be Their Muscle event with MDA partner Burn Boot Camp and attended the MDA Virtual Summit and Hill Day to engage with members of Congress and their representatives to serve the disabled community. Team Humbly Courageous also made their debut in the Indianapolis Monumental Marathon with MDA’s Team Momentum, and they have been approved with MDA Team Momentum to compete as a duo cycling team in the 2023 Boston Marathon. She has also spoken and attended MDA muscle walks and galas along with MDA National Spokesperson Nyheim Hines, NFL running back for the Buffalo Bills. To date, Shinneman’s team Humbly Courageous has raised more than $40,000 for MDA. For the past year, Shinneman has also been sharing Motivation Mondays via her blog, Humbly Courageous.
Follow Amy Shinneman and Leah Zelaya on social media.
About the Muscular Dystrophy Association
The Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people with muscular dystrophy, ALS, and related neuromuscular disorders. For over 70 years, MDA has been a leader in accelerating research, advancing care and advocating to support our families. MDA’s mission is to empower the people we serve to live longer and more independently. To learn more visit mda.org and follow MDA on Instagram, Facebook, TwitterTikTok, LinkedIn and YouTube.