MDA Selects Two National Ambassadors to Represent Families Affected By Neuromuscular Disease
Six-year-old girl from Waco, Texas, and 17-year-old high school senior from Concord, Mass., are set to travel the country and share their stories
CHICAGO, March 12, 2018 — For the first time in its 68-year history, the Muscular Dystrophy Association has selected two individuals to serve and represent families affected by muscular dystrophy and related neuromuscular diseases. Six-year-old Faith Fortenberry of Waco, Texas, and 17-year-old Justin Moy of Concord, Mass., will serve as National Ambassadors for 2018. The announcement took place at the MDA Clinical Conference in Arlington, Va., in front of more than 700 clinicians and health and research industry experts.
“We are honored to have Faith and Justin, and their families, represent MDA as National Ambassadors this year,” said MDA President and CEO Lynn O’Connor Vos. “These young individuals have incredible and different stories to share. I know that they will do a fantastic job for MDA during this exciting time in our organization’s history, as we seek to build on the momentum of recent therapeutic successes, further our mission to provide the best quality of care and empower individuals and their families to live unlimited. Our partners will also enjoy meeting these families and learning about their inspiring personal stories.”
Faith and Justin will be MDA’s 41st and 42nd National Ambassadors. As MDA’s most visible spokespeople, National Ambassadors help forge better connections between families, increase engagement with current and new partners, deepen MDA’s reach among its audiences and champion improved services for individuals living with neuromuscular disease. Faith and Justin will travel the country meeting sponsors and families and attending events, and will chronicle their year on our blogs and social media pages.
Faith Fortenberry is an energetic 6-year-old who loves to dance, cheer and play softball. The daughter of Don and Leeann Fortenberry of Waco, Texas, Faith is a first-grader at South Bosque Elementary School in nearby Woodway. Faith is a natural in front of people, making her an ideal ambassador for MDA.
“She is a delightful young kid,” Leeann said. “She is so friendly and outgoing.”
Faith 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. Spinraza is already having a tremendous impact on Faith’s life.
“It has been a game-changer,” Leeann said. “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.”
Over the years, the Fortenberrys have been active participants in MDA events in the Waco area, from visiting fire fighters who are out filling the boot for MDA to visiting local businesses that are participating in the annual MDA Shamrocks campaign.
For Faith, being an ambassador is a tremendous opportunity to spread her can-do message of hope and perseverance.
“You can do anything, whether or not you are in a wheelchair,” Faith said. “If you want to play sports or just hang out with your friends, you can do it all.”
In 2012, Americans got to meet 12-year-old Justin Moy during the MDA’s Labor Day Show of Strength broadcast. Justin, who loves science and singing in his school’s choir, is now 17 and a senior at Concord-Carlisle High School. Next year, Justin will be going to college, where he hopes to major in biochemistry so he could one day become a muscular dystrophy researcher.
The oldest child of Prow Sarnsethsiri and Chris Moy, Justin has been thankful for the support of MDA over the years and is eager to give back by sharing his story and inspiring others.
“I am excited to do outreach and advocacy,” Justin said. “I want to show MDA partners how helpful MDA has been for my family and me, and share why it’s important to raise money for MDA and to bring awareness to accessibility requirements of those living with neuromuscular diseases.”
Some of Justin’s fondest childhood memories have taken place at MDA Summer Camp, where he made several close friends, including his camp counselor Alex Funez. Alex recently ran the Run to Remember half marathon in Boston on behalf of MDA Team Momentum, pushing Justin along the way.
Prow looks forward to the chance to accompany her son around the country and share the impact MDA has had on her son’s life.
“MDA has given Justin so many opportunities, such as Summer Camp and participating in races, that make his life normal. They are experiences that can’t be put into words,” she said.
Former ambassadors have met with U.S. presidents, such as John F. Kennedy and Ronald Reagan, and for many years appeared alongside Jerry Lewis in MDA’s signature Labor Day Telethon. Faith and Justin, who are the first co-ambassadors in MDA’s history, succeed 26-year-old Joe Akmakjian of Fort Collins, Colo., who recently ended a successful two-year term as MDA’s first young adult National Ambassador.
MDA is leading the fight to free individuals — and the families who love them — from the harm of muscular dystrophy, ALS and related muscle-debilitating diseases that take away physical strength, independence and life. We use our collective strength to help children and adults live longer and grow stronger by finding research breakthroughs across diseases, caring for individuals from day one and empowering families with services and support in hometowns across America. Learn how you can fund cures, find care and champion the cause at mda.org.
Roxan Triolo Olivas
MDA Vice President
Public Relations and Community Programs