MDA National Ambassadors
Each year MDA selects National Ambassadors to represent the thousands of people living with neuromuscular disease and inspire the community through their personal stories. This year, MDA has two National Ambassadors representing the spectrum of people living with neuromuscular disease. They will be sharing our important mission with MDA partners, sponsors, and supporters.
Meet Ethan LyBrand
"I hope to make other kids happy," Ethan says. "I’m excited to go talk to people about having this disease and still living life to the fullest every day."
Diagnosis: Duchenne muscular dystrophy
In school, Ethan LyBrand’s favorite subject is history — he loves learning about the past. As an MDA National Ambassador, he’s hoping MDA will make history for future generations of kids like him, too, with new treatments and cures for all types of muscular dystrophy.
Ethan was diagnosed with Duchenne muscular dystrophy (DMD) in June 2011, two days before his second birthday. The next month, Ethan’s parents, Jordan and Josh, found their local MDA.
“MDA has impacted our lives in several ways,” says Ethan’s mom, Jordan. “The access to Care Centers is so beneficial. And I really give credit to Summer Camp for the way Ethan has handled several things, like getting a wheelchair, because he has seen [other kids who use wheelchairs] and been going to Summer Camp since he was old enough to attend.”
Ethan uses his powerchair, dubbed “Bumblebee” in honor of his favorite Transformers character, at school and for long distances. Recently, he’s been acting in local theater productions, and directors have been incorporating Bumblebee into the shows right along with Ethan.
Kids with muscular dystrophy can’t always do things other kids can, Ethan says. “But at the end of the day,” he says, “we are no different than all the other kids.”
Follow Ethan’s ambassador journey on our blog.
Meet Amy Shinneman
“I am ecstatic to have been 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,” Amy says. “I believe for change and progress to be made, our stories must be shared. Together we fight!”
Hometown: Indianapolis, IN.
Diagnosis: Bethlem myopathy
Amy is very excited to be an MDA National Ambassador and she looks forward to 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. 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.
History of the Ambassadors 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 affected by these diseases to serve as National Ambassadors, telling their personal stories and inspiring support of MDA.
To date, the program has had 40 such ambassadors. These young people, along with their families, have traveled the nation to meet with sponsors, supporters and luminaries including U.S. Presidents such as John F. Kennedy and Ronald Reagan. They’ve also appeared on MDA’s Telethons — often with longtime telethon host Jerry Lewis — 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.
Today, MDA ambassadors continue to play an essential role in motivating millions to help MDA through donations or volunteer action. Former ambassadors have grown up to achieve distinction, transitioning into adulthood while earning advanced degrees and making their marks as authors, educators, bloggers, musicians, artists, and successful business professionals. Their distinctive voices continue to ring out, advocating with great passion and intelligence to raise standards of independence, research, and care for all members of the MDA family and for the disability community in general.