Cal's Cupcakes Blog

Inspiration and Hope 

Founder Maria Kefalas addresses NORD Summit

This is the text of a speech Calliope Joy Foundation founder Maria Kefalas gave at the National Organization of Rare Diseases (NORD) Summit in Washington, DC on Monday, October 16th. Every single day, I wake up thinking about how to get gene replacement therapy to the children who will benefit from these breakthroughs. I am not a doctor or a researcher or even an employee of a biotech, I am just a mom who through a set of remarkable circumstances got a front row seat to one of the biggest medical breakthroughs in a generation. Before I speak today, let me start by acknowledging Dr. Kathy High and the researchers at Spark Therapeutics who made history last Friday with an unanimous vote of s

Cal's godmother takes on the Philadelphia Marathon for kids with leukodystrophy

Nicole Kefalas, Cal's aunt and godmother, and Cal share the same birthday, December 23rd. And in 2013, just a few months after Cal's diagnosis with leukodystrophy, Nicole learned she had MS. This diagnosis was a far more ominous connection. Multiple sclerosis and leukodystrophy are both white matter diseases, and while Nicole's diagnosis was devastating, Cal's diagnosis was terminal. Nicole knew she had to do something to help. So while Cal's mom started selling cupcakes, and Nicole started running. Calliope Joy Foundation co-founder laughs, "Of course my sister Nicole would run marathons and I would sell cupcakes. Nicole's determination to help raise funds given everything that she was fa

Augie's Story

Augie (center) with 4W- and their new squishable pug Each year before the Cupcake Challenge I go to Cynwyd Elementary School and visit with some of the 4th grade classes to talk about our daughter Cal in whose honor we hold the event. This tradition started when Cal’s brother PJ was in 5th grade and he and I went into his fourth grade teacher Mrs. Wells’ class. These visits are always a chance to share a little bit about Cal, to tell her peers what she is like, what she loves to do and what she doesn’t, what TV shows she likes and how she communicates with us even though she can’t talk or use her limbs. Every time I ask the pupils if they have any questions the arms shoot up in the air and I

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