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: Tana 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 Tana Zwart
"Having a purpose this way is really helpful," Tana says, "because it’s doing something. We’ve come so far in the last five years. I have friends who’ve been in studies that are seeing differences in the ways they live their lives. It’s not just an idea anymore — it’s a tangible thing."
Hometown: Edgerton, Minnesota
Diagnosis: Fascioscapulohumeral muscular dystrophy
Tana Zwart is an active member of Sioux Falls, S.D.’s local art community — and she’s been an active MDA volunteer for most of her life.
She was diagnosed with fascioscapulohumeral muscular dystrophy (FSHD) at age 7. Her family immediately connected with MDA, and not long after, became involved in fundraising.
“We’ve been really passionate about the cause,” Tana says of her family. “We felt like it was our way to do something about something we couldn’t really do anything about. It was turning a negative into a positive.”
Tana attended MDA Summer Camp and organized carnivals benefitting MDA at her Minnesota high school. Now, in Sioux Falls, her family has a high-raising Muscle Walk team, and Tana sits on the planning committee for MDA Toast to Life gala events. Her role as MDA National Ambassador is a natural one — and another way, she says, she can continue to expand and advocate for the MDA family.
Follow Tana’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.