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: Keisha and Ethan. 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."
Hometown: Decatur, Alabama
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 Keisha Greaves
“I love the support I get from others with muscular dystrophy,” Keisha says, “because there is nothing like talking to people who get what it’s like living with a disability.”
Hometown: Cambridge, MA.
Diagnosis: Limb-girdle muscular dystrophy
Keisha Greaves has been active in the MDA community since being diagnosed with limb girdle muscular dystrophy (LGMD) in 2010. Keisha’s first step toward accepting her diagnosis was to reach out to MDA and seek the support of people who understood her situation. Since then Keisha has become a strong proponent of the organization working to raise awareness as well as funds to support MDA.
Growing up Keisha had always had a passion for fashion, but as her LGMD progressed she found it difficult for her to continue in her position as merchandise coordinator for major department stores. When her employer declined to let her work from home, she went on to found Girls Chronically Rock, a fashion company she created in 2017 to help inspire and motivate others in the disability community.
“I’m honored and excited to be selected as MDA’s 2021 National Ambassador,” said Keisha. “I feel like it is my job to bring awareness about this progressive muscle disease and the daily struggles that go along with it.”
Follow Keisha’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.