The particular type of muscular dystrophy that afflicts Stephanie R. Warner’s family—facioscapulohumeral, or FSH, for short—initially is characterized, as she explains, “by muscle weakness in the face and the shoulder muscles, and then [it] ends up going to your pelvic and lower limb muscles.”
Her mother has muscular dystrophy, as do a few other members of her family. As a result, it’s something that’s constantly on her mind. “It’s just something that, growing up, I’ve seen sort of daily,” she explains.
In high school, she had helped fundraise for the Muscular Dystrophy Association, but it wasn’t until she arrived at Harvard, intent on studying the sciences, that she began to ask herself a question: “How can I do something with this disease? How can I apply things to it?”
She started following the breakthroughs of what she self-admonishingly deems “real researchers”—the published people, the tenured professors—and ended up wrangling a summer position in a lab in Italy doing genetic work with the disease.
“Doing research is really cool,” she says of the experience, “but doing research for something you really care about—‘fulfilling’ doesn’t even begin to describe how it feels.”
This lab work jumpstarted her desire to connect more of her work at Harvard to muscular dystrophy. “I came back here, and I thought, ‘How can I apply this to what I’m doing at Harvard?’ I thought that the senior design project was a great way to do that.”
Warner’s senior design project—engineering’s equivalent of a senior thesis—involves working with a few Harvard professors using the new technology of “soft exoskeletons” to develop a brace that will assist those who suffer from muscular dystrophy with activities like climbing a set of stairs.
“I’m trying to apply what they’ve already done, and see how that can be applicable to muscular dystrophy,” she explains. “I’m looking to take these soft braces and see what I have to change to make it applicable for this patient population.” She goes on: “This is the first time their stuff will be applied to muscular dystrophy.”
Warner admits that work on the brace has eaten up a lot of her time this year, cutting in on her other extracurricular activities. She’s a FOP leader, a PAF, and until the senior project began to take up so much time, she worked with fellow students and a proctor on an adaptive hiking team.
The team, as she describes it, tries “to make outdoor activities such as hiking accessible for people with physical disabilities.” The team works with Boston and Cambridge community members, organizing outings about once a month to various nearby locales. “It makes the outdoors accessible to them,” Warner explains.
“The proctor in Wigglesworth who started [the program] is like, ‘I just can’t imagine what’s better—you’re exercising, you’re outside, and you’re helping people. Your endorphins are just crazy!’ Which is true, it is a good way to combine those things.”
Next year Warner will be working at W. L. Gore and Associates, the makers of, among other things, Gore-Tex fabrics. She admits it’s not so related to her muscular dystrophy background, though she adds, “it’s an exciting way to start using my engineering background.”
“Where do your hobbies and your passions cross over with your work? If you’re lucky they’re one and the same, but with work it gets a little fuzzier,” she laughs, “because you still have to make some money.”
Somewhere down the line, she explains, she hopes to continue working with muscular dystrophy in some capacity—though for now it’s enough of a rush to simply be employed.