PROJECTS

Each fall, more than a thousand people gather at the Cynwyd Elementary School in Bala Cynwyd, PA for the world’s largest (as far as we know) cupcake celebration with a judged kids’ cupcake baking competition, rides, prizes, arts and crafts and 5000 cupcakes from a dozen of Philadelphia’s finest bakeries.

In 2017, The Calliope Joy Foundation, with a grant from bluebird bio, created the Leukodystrophy Family Forum (LFF)

(www.leukodystrophyforum.com).

The LFF serves as a resource for patient families to get guidance to care for a loved one affected by the 50 forms of leukodystrophy.

To inspire gifted students to pursue careers in pediatric neurology, the Foundation invites qualified college seniors and juniors to apply for the summer fellowship program working alongside doctors and researchers at The Children’s Hospital of Philadelphia. 

Professor Mike Wietz, Chair, Department of Neuroscience, Wellesley College.

TCJF provides major gifts to the nation’s first “center of excellence” dedicated to the care and treatment of children with leukodystrophy. Housed at the world-renowned Children’s Hospital of Philadelphia, specialists in metabolics, gene therapy, bone marrow and cord blood transplants, complex care, neurology, and rehabilitation medicine provide the most advanced care to children.

Families caring for children with leukodystrophy regularly face extended hospitalizations and costly trips to seek treatment in the US and abroad. Cal’s Care Packages and TJ's Travel Grants are available to eligible families who provide documentation from medical professionals.
Contact Sarah Stoney at apply.

Cure MLD is an interactive online community providing support for MLD patients and their families.

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Cure MLD is a global network of patient advocates and nonprofits dedicated to helping families impacted by metachromatic leukodystrophy (MLD). We are here to connect you with resources, information, support, and others dealing with MLD.