In Memory of Calliope Joy has raised $31,562 out of their goal of $10,000
In Loving Memory of Cal
Calliope ‘Cal’ Joy Carr, 12, who inspired a global movement to raise awareness of and funding for rare diseases, passed away on Thursday, March 24, 2022, surrounded by her family at her home in Bala Cynwyd, PA. 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, this past December, 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.
Upon learning of Cal’s diagnosis, her brother 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.
How To Help
$25 per month can help fund a travel grant for families traveling locally or internationally for specialized treatment.
$50 for one year could provide care packages to 5 families impacted by an MLD diagnosis.
Thank you for your support 💜