Cal was diagnosed with late-infantile onset metachromatic leukodystrophy (MLD), a rare degenerative genetic disease, at the age of two. She lost the ability to walk, eat and talk, but never stopped laughing and smiling.
Doctors originally told the Kefalas-Carr family that it was likely that Calliope would not live beyond the age of six. However, in December 2021, Cal defied all scientific odds and celebrated her 12th birthday. She joined the five percent of children with her disease who live to the age of 10. A few months later, Cal passed away on March 24th, 2022.
Upon learning of Cal’s diagnosis, her brother, PJ, had the idea to sell cupcakes to help raise money for doctors researching a cure for “Cal’s disease.” What started off as a local bake sale grew into The Calliope Joy Foundation (CJF) – a non-profit started in Cal’s honor to help support other children with leukodystrophy and their families.
Since 2013, The Calliope Joy Foundation has sold over 45,000 cupcakes and raised nearly a million dollars through annual events. In addition to directly helping families, the foundation helped establish the nation’s first Leukodystrophy Center of Excellence at the world-renowned Children’s Hospital of Philadelphia.
Cal and the cupcake have been featured in the Philadelphia Inquirer, The Huffington Post, Slate, and CBS Sunday Morning with Jane Pauley. Cal's story inspired the memoir Harnessing Grief, and all the author's royalties are donated to Cal's Foundation.
We believe "cupcakes can change the world."
The Calliope Joy Foundation is a charitable non-profit organization with 501(c)(3) status and all gifts are tax deductible
Patrick Carr, a renowned Bala Cynwyd sociologist who taught at Rutgers University, died on April 16th, 2020, at 53, after a near decade-long fight with blood cancer. Pat was the Calliope Joy Foundation’s Co-Founder and Cal’s father. Pat was determined to provide support to other families who were going through what they experienced with Cal’s disease. He worked tirelessly to support the medical professionals with funding in hopes to one day see a cure for leukodystrophy.
Prof. Carr joined the Rutgers Department of Sociology and Criminal Justice in 2005. He was well known for his outstanding work on young people and policing, youth violence and social control, and the transition to adulthood, and authored several books on these themes including Clean Streets, Hollowing Out the Middle, Coming of Age in America, and Theories of Crime. But he always said that he was happiest in the classroom. His students meant the world to him. Even while going through treatment, he didn’t miss a single class meeting, a testament to his dedication to his students.
His impact on our foundation’s events, including past Cupcake Galas, was incalculable.
We miss him dearly and know this evening he’s watching over us – smiling because of the tremendous kindness families shown to support the Calliope Joy Foundation’s mission.
Pat’s unwavering dedication to both his family and the Calliope Joy Foundation was inspiring.
“We understand that our daughter Cal will not benefit from the work we do, but we are grateful for playing a small role in changing what means to have leukodystrophy and offering hope to the families who come after us. The promise of gene therapy to cure Cal's disease has given us a front-row seat to the biggest medical breakthrough in a generation.”
– Maria Kefalas, co-founder, The Calliope Joy Foundation