A photo of Maria Kefalas sitting in a chair with her daughter Cal on her lap.
Maria Kefalas ’89 with her daughter Calliope Joy. “Harnessing Grief: A Mother's Quest for Meaning and Miracles" is a book Kefalas wrote about living with her daughter’s rare genetic disease.

A Rare Gift

Shannon O'Brien
November 4, 2021

Maria Kefalas ’89 learned she was pregnant with her third child in 2009 while attending her 20th Wellesley reunion. In 2012, her daughter Calliope Joy (Cal), then 2, received a devastating diagnosis. With the help of Wellesley friends, Kefalas channeled her grief into helping others, including Wellesley students.

Cal, now 12, has metachromatic leukodystrophy, a rare and fatal degenerative neurological disease that results in declining brain and nervous system functions. As a toddler, all the childhood progress she had made—walking, speaking, feeding herself—began to unravel. “Mothering a child who will never grow up is quite a learning experience,” Kefalas, a sociology professor at St. Joseph’s University in Philadelphia, told the Philadelphia Inquirer earlier this year. “We got rid of her bike and all the toys she’ll never play with.” 

After the diagnosis, Kefalas and her family found support from her Wellesley community. “It was amazing. I hadn’t spoken to my friends nearly enough over the years,” she said. “And they were the ones who really came to my aid.” With input and guidance from friends, including Jill Cairns Milne ’89, president and CEO of a Cambridge, Mass.-based biotech company, Kefalas and her family created the Calliope Joy Foundation with the idea that “when you start a foundation, you can start making an impact right away,” Kefalas said.

Melanie Rumbel ’20 participated in the fellowship at CHOP and now works for an organization called Cure MLD, also run by Maria Kefalas ’89.

Kefalas and her foundation’s board knew that the U.S. had a shortage of pediatric neurologists; the Child Neurology Foundation estimates the number of child neurologists in the country is about 20 percent less than national need. A board member suggested addressing this shortage by getting young, talented people interested in the discipline early in their academic careers. A year after Cal’s diagnosis, Kefalas visited Wellesley along with Dr. Amy Waldman, her daughter’s doctor from the Children’s Hospital of Philadelphia (CHOP) at the University of Pennsylvania, to speak to the faculty and students of the neuroscience department. After meeting with members of the department, Kefalas and the board decided to make a gift to create a summer fellowship program at Wellesley that would allow students to work at CHOP under Waldman, who is an attending physician and assistant professor of neurology at the Perelman School of Medicine at Penn and medical director of the Leukodystrophy Center of Excellence

The Wellesley College Class of 1989 Children’s Hospital of Philadelphia Summer Fellowship, started in the summer of 2014, provides opportunities for students to work in the field of pediatric neurology. Jody Platto DS ’15, the first fellowship recipient, is now in her final year of medical school. She wrote in an email that she was drawn to clinical practice and “first became motivated to pursue a career in medicine” during her summer at CHOP. Waldman, she said, “became my first role model and set the standard for the type of empathetic, patient-centered, evidence-based physician I would like to emulate.”

Helena Yan ’18, now a student at the University of Illinois College of Medicine in Chicago, took the fellowship the summer before her sophomore year at Wellesley to get more “exposure to the patient-facing portion of clinical work and see how research could be combined with patient care.” Yan said the experience was insightful and clarifying, and it taught her about patient advocacy, a topic she continues to explore. It also strengthened her interest in pediatric neurology—prior to entering medical school, she spent a year conducting research in the field at Weill Cornell Medicine at Cornell University.

“I hadn’t spoken to my [Wellesley] friends nearly enough over the years. And they were the ones who really came to my aid.”

Maria Kefalas ’89

Melanie Rumbel ’20, a 2019 fellow, said she’s still in total awe of Waldman. “It was a privilege to watch her work,” she said, and to see how she comforts and communicates with families living through traumatic medical experiences. She said she also learned a lot from the medical students she interacted with—about their career journeys and how they found their way to CHOP. “There are so many different ways to get to where you want to go, and a lot of people take a pretty circuitous route,” she said. “You don’t necessarily always hear about that, so I think that was really good for me, as someone who was questioning, and is still questioning, what I want to do when I grow up.” Rumbel now works for Cure MLD, a sister organization to the Calliope Joy Foundation also managed by Kefalas, supporting families around the globe who have a child recently diagnosed with leukodystrophy. “I tell them what resources we have to offer, and connect them to clinical trials, leukodystrophy-care experts, and other organizations that may help facilitate local connections or have resources in another language,” she said. 

Kat Gallison ’21 was a fellow in 2021 and just accepted a job with CHOP as a clinical research assistant. “This position is exactly what I was looking to do after college,” Gallison wrote in an email. “It’s a great mix of both research and patient experience, and I am hoping it will help me figure out what I want to do with my future career. I also find the work really fulfilling. I’m really happy to have the chance to learn a lot from such an incredible institution.” 

Kefalas said she and the board only considered Wellesley for the fellowship. “[It] was always about the world-class education for women in science,” she said. “When you see these women, when you talk to them, every one of them is more extraordinary than the next.” Kefalas is excited about what these Wellesley graduates will accomplish. “I don’t know what they’re going to do. But I know that through this gift, we got to invest in that potential.”

Though any breakthrough research that might come from these efforts will not benefit Cal, who is doing remarkably well in spite of her prognosis from 2012, the fellowship helps connect her to her mom’s beloved alma mater. 

“Cal will never get to go to Wellesley,” Kefalas said, “but she gets to be part of Wellesley. I feel very proud of that.”