MDA Names Indianapolis Resident, Amy Shinneman as 2022 MDA National Ambassador, Raising Awareness for People with Disabilities in the Neuromuscular Community
Shinneman joins current MDA National Ambassador Ethan LyBrand to share her story and help raise awareness about living with neuromuscular diseases.
NEW YORK, NY, Monday, January 31, 2022 -- The Muscular Dystrophy Association (MDA) has selected Amy Shinneman from the greater Indianapolis, Indiana area to represent families living with muscular dystrophy and related neuromuscular diseases alongside current National Ambassador 12-year-old Ethan LyBrand of Alabama.
"We are honored to welcome Amy Shinneman as our newest MDA National Ambassador and are grateful to have her share her incredible story of strength and perseverance," said MDA president and CEO, Donald S. Wood, PhD. "Amy is a dedicated advocate and fundraising champion who has represented MDA with distinction in our state ambassador program. MDA Ambassadors play an integral role in furthering MDA's mission of empowering people living with neuromuscular disease to achieve their full potential. To Amy, Ethan, and all our ambassadors, I can't say thank you enough for everything you do."
MDA National Ambassadors, Amy and Ethan, will share our mission with the public as well as the organization's partners, sponsors and supporters through social media, live events, virtual and when possible, in person, as well as national media coverage. Their work aims to deepen the reach of MDA, one of the nation's leading voluntary health organizations, and champion improved services for individuals and their families living with disabilities and neuromuscular disease by motivating the public to support MDA through donations, volunteering, advocacy and more.
Watch Amy and Ethan's announcement videos:
About Amy Shinneman
Amy is 47 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.
She enjoys painting with acrylics and oils, cooking, baking, reading and exercising. She also enjoys training for marathons with Jamie, who pushes her in her duo bike. They completed the 2021 New York City Marathon in November raising funds through MDA's Team Momentum.
Amy loves writing and has a blog, "Humbly Courageous," where she shares new posts weekly documenting her experiences living with a disability all her life and how she strives to live life to the fullest.
Amy worked as a counselor at MDA Summer Camp when she was a senior in high school, even though she was not yet diagnosed with muscular dystrophy. After her diagnosis in 2018, she immediately connected with MDA and became a local ambassador. In 2020 she was selected as MDA Indiana State Ambassador and enjoyed giving virtual speeches, participating muscle walks and joined in an Instagram live event with MDA National Spokesperson, Indianapolis Colts running back Nyheim Hines.
"I am ecstatic to be selected as MDA's 2022 National Ambassador and I plan to make the absolute best of my time in this role, connecting with others while sharing my story and bringing others together to support MDA's mission of transforming and empowering the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases," says Amy. "I believe for change and progress to be made our stories must be shared. Together we fight!"
About Ethan LyBrand
Ethan is 12 years old and lives with Duchenne muscular dystrophy (DMD). He loves his family and enjoys spending time with his parents and sister.
Ethan has an exuberance and zest for life that is contagious, and he loves having fun and telling jokes. He has enjoyed being able to bring a smile to people's faces through his experiences as an MDA National Ambassador and by telling jokes through his online "Joke a Day for MDA" efforts shared on MDA's national social media channels.
Ethan and his family appreciate MDA's Care Center Network, his mom sharing that "having the whole care team of doctors, nurses, rehab therapies, and more all working together to provide best-in-class care for your son is incredibly supportive and appreciated!"
"MDA is so important to me and my family because they have helped us get through difficult times," says Ethan. "They are like a second family to us and provide excellent care through the Care Centers, raise money for incredible breakthrough research, and provide kids like me with summer camp which is the best week of the year."
Read more here in our Quest blog.
About the Muscular Dystrophy Association
For 70 years, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA's MOVR is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation's top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events, and materials for families and healthcare providers. MDA Advocacy supports equal access for our community, and each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families. During the COVID-19 pandemic, MDA continues to produce virtual events and programming to support our community when in-person events and activities are not possible. MDA's COVID-19 guidelines and virtual events are posted at mda.org/COVID19. For more information, visit mda.org.