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About us

We can help


support and guidance of

nurses & doctors


social workers

child life specialists

and other patient advocates

Our Story

In 2016, two moms named Jenny and Maria were talking about how hard it was to hear the word leukodystrophy for the first time. Jenny remembered how she had been given a piece of paper and advised not to look up the disease on the web.


The other mom, Maria, was amazed Jenny had been given a piece of paper.  After realizing that too many families did not have the help they needed,  these moms created the Leukodystrophy Family Forum.

The idea was simple, they would build an on-line community so that families could get information, support and guidance to get the best care for their loved one.  There is no reason for families to go this journey alone.

​We invite you to ask questions, join our community, and share these resources with friends and family. We welcome your ideas and suggestions for features and content for the Leukodystrophy Family Forum. Submit your ideas to


The Leukodystrophy Family Forum was formed with the collaboration of The Calliope Joy Foundation and Children's Hospital of Philadelphia (CHOP)

We are grateful for the support of our partners  Elise's Corner and bluebird bio.

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