Patient Advocacy Group Patient Advocacy Group
Calliope (pronounced ka-LYE-ah-pee) Joy Carr, nicknamed Cal, is the youngest child of Pat Carr and Maria Kefalas. Cal was diagnosed with late-infantile onset metachromatic leukodystrophy at the age of 2. Cal is now 6 years old and receives hospice care at home. Because of her amazing nurses and doctors, she laughs and smiles every day.
In 2013, Cal’s family started fundraising by selling cupcakes because they wanted to help children with leukodystrophy. Since that time, "cupcake celebrations" hosted at schools, churches and businesses have sold 25,000 cupcakes and raised $250,000 to establish the nation's first Leukodystrophy Center of Excellence at the world-renowned Children's Hospital of Philadelphia. We believe "cupcakes can change the world."
“This is so much bigger than our family now, this is about what happens after Cal to make sure other children get a very different ending for their stories. We have witnessed the future in these miraculous new gene therapies that promise to do more stop the disease but give children back their childhoods.” – Maria Kefalas, co-founder, The Calliope Joy Foundation