Muscular Dystrophy Association Announces 2023 National Ambassador Leah Zelaya from New York
Zelaya, who lives with a rare form of neuromuscular disease called scapuloperoneal spinal muscular atrophy (SPSMA), will share her story and raise awareness for the organization's mission to empower the people they serve to live longer, more independent lives. Zelaya will join current National Ambassador Amy Shinneman, who lives with Bethlem myopathy, to represent families living neuromuscular diseases. As an MDA National Ambassador, Zelaya and her family 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 legislative priorities.
"My biggest goal as an ambassador is to encourage and support others who live with neuromuscular diseases, as well as their families. By sharing my story, I hope to give a different perspective on how the world views us. I hope to raise enough awareness so that others in our community will also join in our mission of ending neuromuscular disease," said Zelaya. "The Muscular Dystrophy Association has impacted my life in a tremendous way. I am now more confident and comfortable in knowing who I am. This organization has given me the answers to my questions regarding 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 for treatments and ultimately 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.
MDA National Ambassadors play an essential role in motivating the public to support MDA's mission through donations, advocacy, and volunteer action. 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. Their unique voices advocate with great passion and intelligence to raise standards of accessibility in travel and in gaining treatments for early intervention through newborn screening, for research and care for MDA families and all people living with disabilities.
"We are honored to welcome Leah Zelaya as our newest MDA National Ambassador and are grateful to have her share her incredible story of strength and empowerment," said Scott Wiebe, Director, Community Programs, MDA. "Leah and her family are dedicated advocates and fundraising champions who have represented MDA with distinction in our ambassador and advocacy programs. MDA National Ambassadors play an integral role in furthering the mission of the Muscular Dystrophy Association to empower the people we serve to live longer, more independent lives."
"The Muscular Dystrophy Association has given me a purpose and filled a void in my life that was there for so long. I have had so many kinds of opportunities with this organization. There are countless ways to get involved, and I have truly enjoyed each one of them," said Shinneman. "Knowing that so many lives could be changed and so many people can be helped with potential new treatments sparks a lot of passion in me to continue doing all I can on my end to help. It is such an exciting time to be involved with MDA with such promising breakthroughs on the horizon."
MDA is incredibly grateful for the years of service by Ethan LyBrand, who served as MDA National Ambassador from 2020 through 2022, and for his family's support. LyBrand, who lives with Duchenne muscular dystrophy, brought joy to the world as he raised awareness, advocated, and championed the organization's mission through his Shorty-Award-winning "Joke A Day for MDA" series, garnering national media and celebrity attention, including being featured in a Verizon ad on the Oscars highlighting MDA Summer Camp, and a feature with actor and comedian Ben Schwartz.
Watch Leah and Amy's announcement videos:
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 have been advocates for 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 ambulates with bilateral AKFO's leg braces and uses forearm crutches or a wheelchair for long distances.
Zelaya is an actor, dancer, model, adaptive athlete, and advocate. She has danced with the program Dancing Dreams, which provides dance classes and performance opportunities for children living with disabilities, performing on the Meredith Vieira Show, at Lincoln Center and representing Dancing Dreams at the 39th annual Salute to Women in Sports event. Several years ago, Leah discovered her love for adaptive skiing. She also recently joined the Achilles International NYC Chapter Handcycling Team. Leah has walked in New York Fashion Week for Lulu Et Gigi and for the Runway of Dreams virtual fashion show. She participated with MDA in collaboration with Open Style Lab on adaptive fashion and was featured in Elle magazine. Recently, Leah made her debut as an actor in Universal Pictures' movie 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 to both senators and congressional representatives on behalf of MDA families that live with neuromuscular diseases, supporting bills such as healthcare reform, genetic counseling, accessible air travel, newborn screening, and the Orphan Drug Act of 1983.
Shinneman is 48 years old and lives in the greater Indianapolis area with her husband, Jamie, and teenage sons, Luke, and Jack. Amy lives with a type of muscular dystrophy called Bethlem myopathy. She lived without a diagnosis until the age of 44, even though she has had symptoms of the disease since birth. Finally, in 2018, through genetic testing, she received a diagnosis after years of searching. During Amy's first year as MDA National Ambassador, she has made many contributions to the organization, including her role as an MDA Summer Camp virtual counselor for kids participating online, completing the NYC marathon with MDA's Team Momentum (with her team Humbly Courageous), and delivering a welcome address at the 2022 MDA Clinical & Scientific Conference. She participated with MDA partner Burn Boot Camp in the annual Be Their Muscle event, and attended the MDA Virtual Summit and Hill Day, advocating for the disability community with members of Congress and their representatives. Team Humbly Courageous also entered the Indianapolis Monumental Marathon for the first time with MDA's Team Momentum, and they have received entry with MDA Team Momentum to participate in the 2023 Boston Marathon as a duo bike team. She has also given speeches and participated in MDA Muscle Walks and galas, alongside MDA National Spokesperson Nyheim Hines, NFL running back for the Buffalo Bills. So far Shinneman's Team Humbly Courageous has raised more than $40,000 for MDA. Throughout the past year, Shinneman has also shared Motivation Mondays through her blog, Humbly Courageous.
Read more here in MDA's Quest blog.
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 related neuromuscular diseases. For over 70 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, Twitter, TikTok, LinkedIn, and YouTube.