It’s hard to tell when the work day ends and where the volunteering begins for Theresa Cox, who is committed in both her professional and personal life to working with people living with muscular dystrophy and related neuromuscular diseases. For nearly four years, Theresa Cox has been the MDA Care Center Coordinator at Johns Hopkins in Baltimore. Through her work there, she does “a little bit of everything.”
Theresa works with patients and families in any area they need assistance, such as getting genetic counseling and testing, arranging for wheelchairs and even going to individualized education program meetings in schools. She also does patient visits, allowing parents and family members a break, and even brings them a hot cup of coffee in the morning. “There’s places where insurance can’t help, and, if a family has a need, we find ways to make it happen for them.”
That’s just the beginning. “From the time I can remember, my family always has volunteered. My parents always had us doing things — volunteering in hospitals, soup kitchens, Special Olympics. I had, in my parents, some really good examples of what being a person of service is,” Theresa says. “We’ve always given back.”
Theresa is on the Leadership Advisory Board for the Hopkins MDA teen group, serves as the Hopkins team captain for the MDA Muscle Walk (taking place on April 29, 2017), and frequently appears as a conference speaker.
“Volunteering is not something I have to do or want to do. It becomes part of you. You can’t imagine on the first Saturday of the month not going to teen group.”
Theresa’s connection to MDA came through her previous position with Dr. Thomas Crawford, codirector of the MDA Care Center for Neuromuscular Disorders at Johns Hopkins. She was Dr. Crawford’s assistant and managed the office of pediatric neurology for five years before becoming the MDA Care Center Coordinator. “His passion for what he did was really infectious,” Theresa says. “When this position became available, I was like, ‘I have to do it.'”
Before beginning her work at Johns Hopkins, Theresa did not have a personal connection to muscular dystrophy, ALS or related diseases. “But working with Dr. Crawford, I feel like this is where I belong,” she says.”When you’re given these diagnoses, it’s just devastating. He showed me how families can take ownership back.”
Theresa’s deep involvement in the MDA community extends to serving on the leadership planning team for the MDA Summer Camp, attending camp and helping wrangle for the campers. The Maryland MDA Summer Camp is switching locations for the first time in 30 years to Camp Fairlee, which is air conditioned and fully accessible. “The kids would say to us, ‘In every MDA Camp video, there’s a zip line. Where’s the zip line?’ And now we have a zip line. It’s exciting.”
Theresa also helps plan and host a tea party for the younger girls at camp, including providing pottery to make the event really special. “That’s become sort of my ‘thing.’ We paint tea cups and are really girly.”
But there isn’t one particular activity or event that makes MDA Summer Camp so meaningful for Theresa.
“It’s the little moments where you sit down next to a camper or another volunteer and have a conversation and get to know each other in a different environment — get to know them as a person, get to know what their interests are and where they want their future to go,” she says. “I’m really fortunate to be able to have the opportunity to do that.”
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