MDA National Ambassadors
Each year an MDA National Ambassador is chosen to represent the thousands of people living with neuromuscular disease and inspire the community through their personal stories. This year, two ambassadors – Faith and Justin – will be traveling the country and sharing our important mission with MDA partners, sponsors and supporters.
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 dance, cheer and play softball.
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 is already having 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 biochemist,” 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, the 18-year-old Concord, Mass. native, is currently a freshman in college where he hopes to major in bioinformatics and computational biology so he can one day become a muscular dystrophy researcher.
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.