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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...
