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Eat Cake and Help Kids With the Calliope Joy Foundation

One cupcake at a time, this Bala Cynwyd charity is changing lives.

When Maria Kefalas discovered that her 2-year-old daughter, Calliope, had leukodystrophy, there were not many options. Her healthy baby was suddenly suffering, and she learned the disease was fatal. There was only a small clinic of two doctors, and little information or research on the disease itself. She felt unsure and isolated. 

 

Kefalas, who lives in Bala Cynwyd, started selling cupcakes to raise money for research on leukodystrophy, a neurological disorder that affects speech, movement, and even the ability to swallow. The Calliope Joy Foundation, founded in 2013, has now raised more than $300,000 to support leukodystrophy research and help families with sick children.

 

The charity’s motto? “Eat cake, help kids.”

 

The foundation’s largest event, Cal’s Cupcake Challenge, returns for its fifth year Saturday, September 16,  at Cynwyd Elementary School in Bala Cynwyd. Weather permitting, there will be bounce houses, face painting, and more than 5,000 cupcakes from bakeries around the region, all for a good cause. The event runs from 10 am to 3 pm. 

 

“We can honor Cal by giving people a different ending to their stories, and giving people a chance to not go through what we’ve gone through,” Kefalas said.

 

Leukodystrophy is a family of neurological disorders characterized by the imperfect development of white matter in the brain. This causes developmental disorders and can impede mobility, eyesight, and the ability to swallow and eat independently. In most cases, the effects of leukodystrophy are irreversible. There are more than 30 forms of the disease, and it affects roughly 1 in every 7,400 births. 

 

Early screening is essential, because children with leukodystrophy can be developing normally before suddenly regressing. Now, cutting-edge gene therapies are allowing giving children who are diagnosed some fresh hope.

 

“It will go from a incurable illness to where kids who are paralyzed could be walking in the next 10 years,” Kefalas said. “Kids are going to have normal lives and go to school; that’s what we fight for every day and Cal and Cynwyd really make that possible.”

 

The foundation has raised money for the Children’s Hospital of Pennsylvania, which is the only hospital in the United States specializing in the disease, and now has 35 specialists working on research. The organization has also spent more than $25,000 on travel grants to send families to CHOP and funded a  $50,000 research grant.

 

Recently, the foundation helped a family with a child with leukodystrophy affected by Hurricane Harvey get the medication and help they need when their house was flooded.

 

“Having a child with these illnesses is financially and emotionally hard on families,” Kefalas said. “If they need to get to CHOP, we can get them here.”

 

The Calliope Joy Foundation provides care packages and information to families who have a loved one diagnosed with the disease, and aims to ensure that there is hope. Although Calliope is receiving hospice care, she is still very much a part of the community, and her story has helped raise awareness for the disease.

 

By increasing awareness and research for gene therapy and infant screenings, Kefalas hopes to help children like Calliope have a chance to live a full and happy life.

 

“It’s not hypothetical or wishful thinking,” Kefalas says. “Gene therapy is about to explode in the next two years and we want it to happen faster. I know we can’t help my daughter but I don’t want any other family to go through this.”

 

Photograph courtesy of the Calliope Joy Foundation. 

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1 COMMENT
  • Cupcake Maria September 15, 2017

    Thanks to Casey and our friends at Family Focus for doing a feature on Cal’s Foundation and the Cupcake Challenge.

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