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Calliope Joy Foundation

Cal's Foundation supports families, research, and helps to improve the care and treatment available to children with the 50 forms of leukodystrophy.

www.thecalliopejoyfoundation.org Tax ID 90-1005140

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In 2013, we started selling cupcakes for $1 each to help children with leukodystrophy. That bake sale has grown into Cal’s Cupcake Challenge, and now we fund research, support families, and offer travel grants for families seeking treatment across the globe. In 2015, our foundation helped establish the nation's first Leukodystrophy Center of Excellence at the world-renowned Children’s Hospital of Philadelphia

 

 

What is leukodystrophy? 

Many leukodystrophies are caused by "broken genes" not producing enzymes needed for the healthy development of the brain's white matter (or myelin). Children with leukodystrophy appear normal but  lose the ability to walk, talk, eat and see.  There are 50 forms of the disease affecting approximately 1 in 7400 live births.  Untreated, all forms of the disease are fatal.

Who is Calliope?

Calliope "Cal" Joy Carr is the youngest child of Pat Carr and Maria Kefalas. At age the of two, Cal was diagnosed with late-infantile onset metachromatic leukodystrophy. Named for Calliope, the Greek goddess of music and poetry who inspired beauty in the world, Cal inspires all who know her to help families and children affected by leukodystrophies.