MDA National Ambassadors

Each year MDA selects National Ambassadors to represent and inspire the community through their personal stories. MDA has two National Ambassadors – one child and one adult – representing the range of people living with neuromuscular disease. MDA National Ambassadors serve the mission by telling their personal stories to inspire millions to help MDA through donations or volunteer action.

Meet Amy Shinneman

“I am truly honored to have been selected as MDA’s National Ambassador for a second term, and it is really hard to put into words what this opportunity has meant to me. Being able to connect with others while sharing my story, is so important to me,” Amy says. “I believe for change and progress to be made, our stories must be shared. Together we fight!”

Age: 48

Hometown: Indianapolis, IN

Diagnosis: Bethlem myopathy

Amy is very excited to serve as 2022-2023 MDA National Ambassador and she enjoys encouraging others to share their stories. She feels there is much power and opportunity for change and growth when community members share their stories and how neuromuscular disease affects their lives.

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.

“After receiving my diagnosis and connecting with MDA,” Amy shared, “it was like the final piece of the puzzle was snapped into place and I finally felt complete. Connecting with others and sharing my story with others who share similar struggles and truly understand has been life changing for me.”

Amy is a mom to teenage sons, Luke and Jack. She enjoys painting with acrylics and oils, cooking, baking, reading and exercising. She also enjoys training for marathons with her husband, Jamie, who pushes her in her duo bike. They’ve completed multiple marathons, including the Chicago and New York City marathon, and are competing in the Boston Marathon for MDA Team Momentum in 2023. Amy loves writing and has a blog called Humbly Courageous, where she shares a new blog post each week documenting her experiences having lived with a disability all her life and how she strives to live life to the fullest.

Follow Amy’s ambassador journey on our blog.

Meet Leah

”It is important to advocate for yourself and to raise your voice for those who cannot,” Leah said, “and by sharing my story, I hope to raise awareness and get others to join in supporting MDA’s mission.”

Age: 15

Hometown: New York State

Diagnosis: Scapuloperoneal Spinal Muscular Atrophy

At the young age of 15, Leah is an accomplished actress, dancer, model, and adaptive athlete. Among other things, she has appeared on the Meredith Vieira show, danced on the Lincoln Center stage, walked the red carpet with Billy Jean King and Paraolympian, Oksana Masters, walked in New York Fashion Week, and recently appeared in the Jennifer Lopez movie, Marry Me. She is a dedicated advocate and has gone to our nation’s capital to speak to legislators about issues important to individuals living with disabilities.

Born with a rare form of neuromuscular disease, Leah faced a host of challenges including medical claims that she would possibly never be able to walk. In spite of these obstacles, Leah learned to believe in her abilities. In 2008 through strenuous physical therapy, she began to walk with bilateral leg bracing and a walker. Later that year, she traded her walker for a pair of forearm crutches that improved her independent ambulation. Today, she is able to freely ambulate with just her leg braces.

Follow Leah’s ambassador journey on our blog.

History of the National Ambassador Program

Beginning in the early 1950s, when public awareness and understanding of muscular dystrophy and related diseases were almost non-existent, MDA put a human face on its mission by calling upon young people living with these diseases to serve as ambassadors, telling their personal stories and inspiring support of MDA, with one such ambassador identified each year as MDA National Ambassador.

To date, the program has had over 45 such national ambassadors. They have traveled the nation on behalf of MDA to meet with sponsors, supporters and luminaries, including U.S. Presidents. They’ve also appeared on MDA’s Telethons and other forums such as “Larry King Live,” “Oprah,” “Today,” and “Good Morning America." Ambassadors have graced more than 15 covers of Parade magazine and served as guests of honor at Walt Disney World, Disneyland, and the Rose Parade.

Alumni National Ambassadors have grown up and transitioned into adulthood. They served the neuromuscular community as ambassadors, and they now reflect the fabric of the MDA community and the wider community at large – as educators, bloggers, musicians, artists, successful business people, and more. Many alumni ambassadors continue to ring out, advocating to raise standards of independence, research, and care for all members of the MDA family and for the disability community in general.

Today, ambassadors continue to play an essential role, leading the way with MDA, creating awareness of neuromuscular disease, and empowering people to live longer, more independent lives.