This is a different kind of race for Amy Shinneman.
Shinneman is racing to rally community members to support Muscular Dystrophy Association for Giving Tuesday Dec. 1
The 46-year-old Noblesville resident’s condition remained undiagnosed in 2018 when she inally learned she had Bethlem myopathy, a form of congenital muscular dystrophy that causes muscle weakness throughout her limbs.
“Muscular dystrophy had been mentioned but there was never an official diagnosis,” Shinneman said.
Her husband, Jamie, wanted his wife to feel the excitement of being in the race even though she couldn’t run. They trained and he pushed her on the duo bike in the Chicago Marathon in October 2019.
“For both of us, it was just an incredible experience,” Shinneman said. “With the huge crowd in Chicago, you could just feel their support. He was happy he was out there with me and I was able to experience running a marathon, even though I wasn’t technically running.”
Family and friends made the journey and were supporting her along the route.
“That was the most special part of it,” Shinneman said. “We were training to do others and COVID took over. Jamie still runs and we take the duo bike for when we do our next marathon.”
The couple wants to compete in the Boston and New York marathons. Jamie has completed Boston twice by himself.
Shinneman used the marathon to help raise money for MDA through a fundraising personal page.
“The Muscular Dystrophy Association is the largest and longest-established organization for people who have neuromuscular diseases,” Shinneman said. “For my husband and I to be connected and involved where we can make the best use of our story and raising funds for the Muscular Dystrophy Association is so important to us. The donations are so important to help continue the innovations in science and care and providing services in multi-care centers, where someone can go and get all different kinds of support in one place.”
Shinneman, who shares her story through Instagram and Facebook, was named Indiana’s state ambassador for 2020 earlier in the year.
“It was a huge honor, and I was so excited to have that platform to tell my story and encourage others to do the same,” she said.
Shinneman hasn’t been able to do the public appearances she was scheduled to do because of the pandemic.
“Instead of sitting around and waiting for this to pass, I had to keep working, and at that point I really opened up about my story,” said Shinneman, who did take part in MDA’s Virtual Muscle Walk in September. “It’s a pretty vulnerable thing to do. I share stories and pictures of personal struggles and triumphs. I’m a mom and wife and juggling that with living with muscular dystrophy.”
Shinneman has two sons, Luke, 17, and Jack, 13. Luke is a junior at Noblesville High School. Shinneman graduated from NHS in 1992 and Jamie graduated in 1991.
Shinneman said family members and friends have come together to keep the momentum of raising the funds through the pandemic.
“Just an example, my best friend, Shelli Goudreau (Noblesville resident), works for a media company and the company has offered free spots on billboards (in South Bend and Anderson) to promote Muscular Dystrophy and what we’re doing,” she said.
Donations for Giving Tuesday can be made at mda.org.