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 three National Ambassadors representing the spectrum of people living with neuromuscular disease: Tana, Faith, and Justin. They will be traveling the country and sharing our important mission with MDA partners, sponsors, and supporters.
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, Minn.
Diagnosis: Fascioscalpulohumeral 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 fascioscalpulohumeral 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.
Meet Faith Fortenberry
“It’s OK to be in a wheelchair, and it’s OK to be who you are,” Faith says. “You can do anything, whether or not you are in a wheelchair. If you want to play sports or just hang out with your friends, you can do it all.”
Hometown: Waco, Texas
Diagnosis: Spinal muscular atrophy type 2
Faith Fortenberry is an energetic 7-year-old who loves to sing, act, and play sports.
She lives with spinal muscular atrophy (SMA) type 2, and represents a new generation of MDA children who are now benefitting from the FDA-approved drug Spinraza, which has been heavily supported over the years by MDA funding. In Faith’s case, Spinraza has had a tremendous impact on her life. “It has been a game-changer,” says her mother, Leeann. “She can now lift things, hold a glass, and brush her own teeth, which she was not able to do before. More importantly, she is able to breathe better.”
Spinraza has helped Faith stay out of the hospital, which has not only enabled her to take on a busy travel schedule as a national ambassador but also might very well have saved her life.
“Her lungs were so weak before that whenever she had sniffles she had to go to the ICU,” Leeann says. “Now she’s breathing deeper and longer. She’s coughing now — she never was able to cough, or even sneeze. It’s been huge for her.”
Follow Faith’s Ambassador journey on our blog.
Meet Justin Moy
“I want to become a bioinformaticist,” Justin says. “I want to go into academic research or work for a pharmaceutical company so that I can help find a cure for my disease.”
Hometown: Concord, Massachusetts
Diagnosis: Congenital muscular dystrophy
Justin Moy, an 18-year-old Concord, Mass. native, is currently a freshman in college majoring in bioinformatics so he can one day work toward finding treatments and cures for muscular dystrophy.
Justin, who lives with congenital muscular dystrophy (CMD) and uses a power wheelchair, has always been intensely focused on what is possible rather than dwelling on limitations. It is an attitude instilled in him at a young age by his parents. The oldest child of Prow Sarnsethsiri and Chris Moy, Justin has always dreamed big and focused on the open doors in life.
Justin has been living with the effects of CMD since birth, although he was officially diagnosed at 6 months old. Since his diagnosis, MDA has played a major role in Justin’s life, providing services and opportunities that have enabled him to thrive. One of Justin’s fondest memories was his time at MDA Summer Camp, where he was able to befriend other kids like him.
Follow Justin’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 Goodwill 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.