Lower Merion High School recently welcomed Maria Kefalas and Patrick Carr, co-founders of The Calliope Joy Foundation, for a special check presentation from the Aces' Winterfest fundraiser and food drive, which took place in late December. LMHS teachers and Winterfest co-sponsors Tom Kline and Brian Feeney, along with Principal Sean Hughes, presented the check in the amount of $1,850, which will go towards supporting leukodystrophy research.
Calliope Joy Carr is the youngest child of Carr and Kefalas, and was diagnosed with late-infantile on-set metachromatic leukodystrophy (MLD) at age 2 in 2012. Leukodystrophies are a group of disorders that affect the white matter of the brain. Children with leukodystrophies are born healthy but start regressing, losing the ability to crawl, walk, speak, eat, smile and laugh. Although leukodystrophies do not currently have cures, if detected in the newborn period, a stem cell transplant may be a therapeutic option for some patients. Early detection also allows for preventative care strategies to improve quality of life for children and their families. There are more than 60 forms of the disease and 1 in 5,000 are affected.
In 2013, The Calliope Joy Foundation started selling cupcakes to help children with leukodystrophy. That bake sale has grown into Cal's Cupcake Challenge, and the funds raised established the nation's first Leukodystrophy Center of Excellence at the Children's Hospital of Philadelphia (CHOP).