Our Mission

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


Recent Posts


    Read the full blog

    Thursday, December 18, 2014

    Becky Lewis Vivian's Story

    When I heard how Becky Lewis Vivian was going to Italy to get an experimental gene therapy, I understood the risks she was taking and how much she would sacrifice by quitting her job, living in a hotel over a Chinese restaurant in Milan, and leaving her family .  Becky believed in miracles even when many (myself included) were skeptical, and now, as you can see, Becky's bravery has been rewarded. 

    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.

    video
    http://vimeo.com/114337583


                                           

    Saturday, December 6, 2014

    Thank you to Squishables


    Squishables has made it possible for us to send Cal's Care Packages to kids with leukodystrophy in Italy, Nebraska, Minnesota, Texas, Oklahoma, Pennsylvania, Arizona, California, Utah, and Indiana. Thank you.




    Thursday, December 4, 2014

    Giuliana Carella, 2014 mtvU Changemaker

    We could not be more proud of Giuliana Carella who was recognized by mtvU as one of 8 Changemakers for her work on behalf of her community through Saint Joseph's University American Marketing Association and her sorority Phi Sigma Sigma. The nominating committee was most impressed  by Giuliana's work for Cal's Cupcake Challenge and how she played a critical role in making the day an incredible success.   

    Giuliana Carella and Colleen Cruice pictured below from Cal's Cupcake Challenge 2014.

    Tuesday, November 25, 2014

    Daddy's Girl

    Most of the time, when children with leukodystrophy go  out in public, what people see are the drugs to manage seizures and muscle spasms that make kids sleepy and out of it. People often seem surprised Cal is responsive. The fact is that even children as sick as Cal have their way of being in the world and experiencing joy.  The trick is that you must be brave enough to be present with children like Cal.  So, here is a photo of how Cal is with MLD.  

    I have come to believe there is no point in dwelling how she was, and so, for those us blessed by my daughter and children like her...I hope this photo teaches you about our family. 

    Be thankful for your children, we are grateful for ours.

    Monday, November 10, 2014

    Let me tell you what cupcakes can do....

    Sent six children to Italy for life-saving gene therapy treatments.

    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.