Teen with Rare SMA Form Named MDA National Ambassador for 2023

Leah Zelaya of New York to advocate for all with a neuromuscular disease

Patricia Inacio, PhD avatar

by Patricia Inacio, PhD |

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Leah Zelaya, a 15-year-old with a rare form of spinal muscular atrophy (SMA), was chosen by the Muscular Dystrophy Association (MDA) to be its 2023 MDA National Ambassador.

As national ambassador, the Brooklyn, New York, teenager represents all those living with a neurological disease in the U.S. She and her family will participate in MDA events across the country, sharing their stories of life with a rare neuromuscular disease, raising awareness, and advocating for MDA legislative priorities.

Zelaya has scapuloperoneal SMA (SPSMA), a form characterized by progressive muscle weakness and atrophy (shrinkage) in the shoulders, lower legs, and hands. This type of SMA is caused by mutations in the TRPV4 gene and is estimated to affect fewer than 1 person in every 1 million.

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Zelaya, who has scapuloperoneal SMA, is also an adaptive athlete and actor

Zelaya, who walks with assistance and uses a wheelchair for long distances, is also a dancer, actor, model, adaptive athlete, and advocate. She has participated in Dancing Dreams, a nonprofit program for youth with physical challenges, appeared in Universal Pictures’ 2022 film “Marry Me,” enjoys skiing, and recently joined a local handcycling team, according to an MDA press release. She also was featured in an Elle magazine article.

Zelaya and her family served as MDA advocates at meetings with U.S. senators and congressional representatives, supporting legislative proposals of benefit to the neuromuscular community.

“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, MDA director of community programs.

“Leah and her family are dedicated advocates and fundraising champions who have represented MDA with distinction in our ambassador and advocacy programs,” Wiebe added. “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.”

A video of Zelaya’s speech as the 2023 MDA National Ambassador is available.

“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,” Zelaya said.

She also credited the MDA with helping her to be “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.”

The MDA National Ambassador program has welcomed more than 45 ambassadors in its 70 years, all raising awareness of muscular dystrophies, advocating for research funding into better treatments and a cure, and sharing their personal stories.

Ambassadors travel the U.S. garnering public support for the MDA’s mission through donations, advocacy, and volunteer work. Among their goals are greater accessibility in travel and access to early treatment via newborn screening programs.

Amy Shinneman, who lives with Bethlem myopathy, a disease characterized by slowly progressive weakness of the skeletal muscles and joint stiffness, is the group’s 2022 national ambassador.

“The Muscular Dystrophy Association has given me a purpose and filled a void in my life … There are countless ways to get involved, and I have truly enjoyed each one of them,” Shinneman said.

“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,” she added.