Noblesville resident Amy Shinneman named MDA National Ambassador


Amy Shinneman was diagnosed with muscular dystrophy in 2018, yet the Noblesville resident quickly became active in fundraising for the Muscular Dystrophy Association.

Shinneman has been a local ambassador, a state ambassador and has been named as a 2022 Muscular Dystrophy Association National Ambassador. She will be joined by fellow National Ambassador Ethan LyBrand, a 12-yer-old.

“I’m honored they selected me as National Ambassador,” Shinneman said. “It’s been on my big-time goal list for a few years. It was really a dream come true for me. I feel part of my role is helping to raise awareness. I look at it as a way for me to give back in order to help others to help spread that awareness. I’m a 47-year-old woman who has lived her whole life with muscular dystrophy. I look at it as a way I can help connect with others who are feeling alone in their journey with muscle disease.

“It’s something I longed for growing up, and I feel now I can be that for someone else.”

Shinneman, who lives with a type of muscular dystrophy called Bethlem myopathy, wasn’t diagnosed until she was 44, even though she has had symptoms of the disease since birth. In 2018, she received a diagnosis through genetic testing.

“MDA has declared 2022 as the year of independence, and what that means is, the ability to believe in yourself,” Shinneman said. “It’s for people in the community to share their stories and celebrate their successes, but also share challenges we face in our daily lives. As National Ambassador, I’m fortunate to be able to share my story. I’ve connected with a lot of people sharing my story. Not having a diagnosis for so long, I felt really alone. Sharing our stories isn’t always the easy thing to do, but it’s pretty rewarding when you make those connections with others who are living with the same challenges you are.

“There’s strength in numbers. It makes us stronger in our fight.”

Shinneman’s husband, Jamie, is a marathon runner. He pushed his wife in a duo bike at the 2019 Chicago Marathon. They completed the New York Marathon in November 2021. At both marathons, they raised money for MDA. Shinneman said the couple plan to do another marathon this year.

She has a blog called “Humbly Courageous,” where she shares her experiences.

Shinneman said there are different campaigns for MDA. This is the 40th year of the MDA Shamrocks fundraising campaign, held during March.

“I’ll be doing a lot of stuff virtually,” Shinneman said. “MDA is pretty active on all social media platforms. You’ll see people sharing their stories and why certain campaigns are important. It’s helping MDA in their mission to transform those living with ALS, muscular dystrophy or related neuromuscular disease.”

Shinneman said MDA wants to get back to some in-person events.

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