Bio

Maria Kefalas studied economics at Wellesley College and earned her M.A. and Ph.D. in sociology from the University of Chicago.  She worked at the Brookings Institution, held a post-doctoral fellowship at the University of Pennsylvania, and taught at Barnard College (Columbia University) before joining the faculty of Saint Joseph’s University in Philadelphia. Kefalas is the author of numerous books and articles, and has received grants from the William T. Grant Foundation, the MacArthur Foundation, and the Department of Justice.

Her life took an unexpected turn in 2012 when her husband, father, and father-in-law were all diagnosed with cancer.

That same year, on the fifth of July, she learned her youngest child, Calliope “Cal”, suffered from a fatal degenerative neurological disease called metachromatic leukodystrophy (or MLD).  Leukodystrophies are in the same family as Tay-Sachs and Canavan diseases. Cal would lose the ability to walk, talk, and feed herself within months.  Cal was not expected to survive beyond the age of six.

Kefalas gained fifty pounds and struggled with depression and grief.   

Then, a year after her daughter’s diagnosis, Cal’s nine-year-old brother PJ suggested that the family start selling cupcakes “to raise money and to help kids like Cal.”  This idea for a bake sale would change everything. She started blogging under the name “The Recovering Supermom” and published essays in Slate, STAT, The Mighty, and The Huffington Post. With her husband, Pat Carr, Kefalas is the co-founder of the Calliope Joy Foundation and Cure MLD.

Over the next several years, the family would sell 50,000 cupcakes. That money would help establish nation’s first Leukodystrophy Center of Excellence at the world-renowned Children’s Hospital of Philadelphia.  She has become a nationally recognized parent advocate for gene therapy who has spoken at the NIH, NORD, and the FDA.

Tragically, Kefalas’s husband, Rutgers University sociologist Pat Carr died from multiple myeloma on April 16, 2020.

Cal would beat the odds for over a decade. Cal succumbed to the disease at the age of 12 on March 24th, 2022. She was surrounded by her family, nurses, and doctors at her home. She left this world while her brother PJ held her in his arms.

The story of Cal and the cupcakes has been featured on CBS Sunday Morning with Jane Pauley and the Chan Zuckerberg Initiative.  Kefalas’s work was funded by the Philadelphia Eagles, and she  received the 2018 Rare Impact Award by National Organization of Rare Disorders (NORD). 

Her latest book  Harnessing Grief: One Mother’s Quest for Meaning and Miracles was published by Beacon Press.

Maria and her family continue to sell cupcakes and they have raised over a million dollars to help children impacted by leukodystrophies. Libmeldy, a gene therapy to treat Cal’s disease, was approved in the EU and UK in 2021. That same year, the state of New York began screening newborns for MLD. And Maria is working tirelessly to ensure that MLD will become one of the five percent of rare diseases with an FDA approved treatment in the near future.

Maria has embraced a healthy lifestyle with the help of her family and she only sells cupcakes these days, but rarely eats them anymore herself.

She lives outside of Philadelphia with her children Camille and PJ and a rescued dog named Brody. Camille recently graduated from the College of Wooster with a degree in sociology and religion and has been inspired to work in the health care field because of Cal. PJ is a transfer student at Rutgers University studying biochemistry, he hopes to use his degree in science to join the fight against genetic diseases like leukodystrophy. Maria is a professor at Saint Joseph’s University.

Learn more about leukodystrophy and the promise of gene therapy at Cal’s foundation today at www.thecalliopejoyfoundation.org