Search
An open letter to GSK CEO Emma Walmsley
The news that GlaxoSmithKline would divest from rare diseases intrigued industry watchers and left employees at the UK's largest...
What Cal taught us
It was a pleasure to be part of Cal’s Cupcake Challenge and experience the immense impact that Cal, supported by her family and...
Gene therapy research grant information
Calliope Joy Foundation Request for Proposal August 2017 Background Leukodystrophies are a group of disorders affecting the brain’s white...
The Fifth of July
Cal received her official diagnosis of late-infantile onset metachromatic leukodystrophy (LI-MLD) on July 5th, 2012. Pat and I had...
We're Partnering With The Mighty to Help People with Leukodystrophy!
We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We wil
Reframing Hope: Children's Hospice and Pediatric Palliative Care
We were so pleased to work with the Washington DC based filmmaker Rachel Feichtner of Brave Girl Productions on this video titled...
A message from Loie's dad- Matt Hammond
Many of you have helped support my family and I in the opening of the first Leukodystrophy Center in the United States. We cannot thank...
Why I invited members of Congress to meet Cal
Originally printed in The Mighty. In 2012, I went from being a soccer mom with a minivan to a recipient of public assistance. The fact...
Miracles
Callie and my father in 2011. With the story of a child born in Bethlehem and the miracle of the Maccabees with the wick of the menorah...
"Don't give up"
Not long ago, I found myself speaking to a program administrator at the FDA. It was a classic elevator pitch, I told him all about the...
