Calliope Joy Carr, age 2, August 2012, on the family's Make -A-Wish vacation to The Winnetu Resort in Martha's Vineyard. Photo by Audrey Le Tesson.
With your help, doctors have the ability not simply to cure pediatric neurological diseases, but to
ensure these children never become ill. We work tirelessly to help doctors and researchers provide children the best care (from active treatment to palliative/hospice care).
The Calliope Joy Foundation is helping our partners at The Children's Hospital of Philadelphia become a national leader in the treatment of orphaned neurological diseases, namely leukodystrophy. In a decade, hundreds of children will be in school and celebrating birthdays
because of what we made possible today.
Because of the passage of Pennsylvania's Hannah's Law and New Jersey's Emma's Law, doctors will be able to save the lives of 66 children born each year with globoid cell leukodystrophy, or Krabbe disease.
Help us give children their childhoods and
change the world with cupcakes.
#EatCake & #HelpKids
Thursday, December 18, 2014
And, I could not be more proud and happy to know her and call her my friend.
Here is the moving segment Italian television produced about a mom from Pennsylvania who risked everything, and travelled to Milan. Liz Scott remarked that someone should do a film about the mothers (myself included) who are fighting to bring this treatment to the US and get it to children with other forms of leukodystrophy. How amazing it was to think that Liz Scott, the founder of the Alex's Lemonade Stand Foundation, would be impressed by what we have accomplished.
So, in 5 minutes, you can learn about why we are selling cupcakes, hosting walks, writing letters and believe that we can save children like Cal.
English subtitles make it possible for you to follow the story. Because of Becky, Eli and Ella, I get to be a part of so many miracles and to change the world with Cal's help.
Saturday, December 6, 2014
Thursday, December 4, 2014
Tuesday, November 25, 2014
Saturday, November 22, 2014
Monday, November 10, 2014
Helped a family get a specially adapted van.
Shipped care packages to children all over the planet.
Provided funds for a family to renovate their home to care for a child with leukodystrophy.
Established the Cal's Wishes Fund at the Kind Pediatric Hospice Unit (one of five children's hospice units in the nation).
Made gifts to extraordinary families to help make birthdays extra special.
Established a research fund at the Children's Hospital of Philadelphia to identify unspecified leukodystrophy cases in 62 children.
Funded a summer fellowship for a student to work at the Children's Hospital of Philadelphia with researchers and clinicians in neurology.
Supported CHOP's Pediatric Advanced Care Team who care for medically fragile, neurological patients.
Worked with our partners at The Children's Hospital of Philadelphia to build a Leukodystrophy Group to care for children identified through newborn screening with globoid cell leukodystrophy.
#EatCake and #HelpKids
Cupcakes can change the world....just watch what you help us do next.