Justin Moy’s future is brimming with potential. The 17-year-old Concord, Mass., native is currently a senior at Concord-Carlisle High School, where he enjoys science and participating in the school choir. Although he hasn’t yet figured out what college he’s going to attend, he knows what he wants to do once he gets there.
“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.”
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. With the help of MDA, Justin will soon be able to share this message with a much wider audience.
A new National Ambassador
On March 12, in front of more than 700 stakeholders including clinicians, health care providers and researchers at the 2018 MDA Clinical Conference in Washington, D.C., Justin was announced as one of MDA’s two new National Ambassadors. “It is a great honor to be a national ambassador,” Justin says. “I am excited to do outreach and advocacy. 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.”
Justin will be joined on the national stage by fellow ambassador 6-year-old Faith Fortenberry of Waco, Texas. As part of his responsibilities, Justin will be visiting with sponsors, partners and lawmakers and participating in signature MDA events. At these appearances, Justin will share his personal story and talk about the importance of continued support for MDA as the organization enters an exciting chapter in its history. Justin will also write blog posts and update the MDA community through social media about his various travels around the country.
Over the years, the National Ambassador program has brought tremendous visibility and awareness to MDA. 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.
Justin and Faith, who are the first dual 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’s impact
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. He also formed a lifelong bond with his camp counselor, Alex Funez, who has been an integral part of Justin’s life ever since.
“We did the Run to Remember race in Boston last year,” Justin says. “We are also going to be taking a trip with my school to Japan to visit our sister city in Nanae. Japan has always been on my bucket list, and Alex jumped at the opportunity to go.”
MDA has provided the opportunity for Justin to hone his public speaking skills, which will be put to good use as a National Ambassador. At age 12, Justin was featured on the MDA’s Show of Strength broadcast, where America got to hear his personal story and witness his zest for learning. More recently, Justin has spoken at MDA Team Momentum events in the Boston area, motivating runners by sharing his journey and conveying the importance of the money they raised.
Justin’s mother, Prow, is grateful for all that MDA has done.
“MDA has given Justin so many opportunities, such as Summer Camp and participating in races, that make his life normal,” she says. “They are experiences that can’t be put into words.”
Spreading a message of hope
Prow is confident that Justin will make an ideal ambassador.
“For Justin, being a National Ambassador, I know that he will be able to put forth the message that despite our challenges, we can still live life,” she says. “Even if you have limited abilities, you have support — friends, relatives, the MDA — and with support, you can find solutions.”
As Justin travels the country, meeting with MDA sponsors and partners, he is excited to embody MDA’s Live Unlimited motto.
“Live Unlimited is one of my core ideals I live by,” he says. “To me, it means taking advantage of every opportunity you’re given. With my disability, I have a lot of limitations. But there are so many things I can do that if I let my limitations hold me back, I’ll let my disability get the better of me.
“We need to be outgoing, and not afraid to do things that are uncomfortable,” he says. “If you let fear hold you back, or you just don’t want to do something, you are missing an opportunity to enjoy life. There are so many doors you can open that will lead to a fulfilling life.”
Now that you’ve met Justin, meet Faith! She and her family shared their story on our blog, too.
Help kids and adults like Justin and Faith continue to live longer and grow stronger!
