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Inspirational Child with MLD, Calliope Joy, Passes Away
Calliope Joy Carr defied all odds by living with rare genetic disease for 12 years (Bala Cynwyd, PA) — Calliope ‘Cal’ Joy Carr, 12, who...
The grief of diagnosis
The minute you learn your child has a diagnosis of a terminal illness, you die too. You are not literally dying. It is a psychic and...
How much would you pay for a miracle?
Yesterday's New York Times featured an editorial about the cost of gene therapy and the recent controversy surrounding Norvatis's gene...
Chan Zuckerberg Initiative showcases Cal
Filmmaker Joanna Rudnick travelled from California to spend time with Cal and tell her story. We were honored to be featured among seven...
Cal's Cupcakes featured by Chan Zuckerberg Initiative
Cal's Foundation was one of seven rare disease advocates from around the United States featured by the Chan Zuckerberg Initiative....
On the 7 year anniversary of Cal's diagnosis
Seven years ago, the doctor came into our hospital room at the Children's Hospital of Philadelphia and pulled up a chair and told me :"We...
Christmas Johnny
Back in the old days, when I was not nearly so good at impersonating a courageous person, I wrote a blog under the name "The Recovering...
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
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...
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...
