AYJ Fund

When we started our journey, not only had we not heard of Gliomatosis Cerebri, but also could not find anyone else who had been diagnosed with the same disease. As many do, we reached out to the internet and social media. What we found was that information was very limited. At the time there was not research being done on this disease and no community of Gliomatosis Cerebri families. 

We are pleased to say this has now changed. Through social media we were able to reach out to a few other families, and once connected we felt the need to do more. We helped connect the community and physicians and through a number of committed physicians who were determined to hold the first Gliomatosis Cerebri International Conference in March of 2015 at the Curie Institute in Paris, France. This conference was sponsored by a small number of  GC family foundations from the United States, France and Spain.

A second conference was held at the National Institutes of Health in Bethesda MD, just outside Washington D.C. This conference connected more than 40 physicians and researchers and was sponsored by twelve families and family foundations committed to supporting research to find effective treatments and one day a cure for Gliomatosis Cerebri.

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For a summary of the presentations from the conference please see attached document.

In addition, there is now also a private Facebook Group, “The GC Connection”. This is a wonderful community of families who have been connected through the difficult diagnosis of Gliomatosis Cerebri. Through this group we share experiences, treatments that current patients are on, experience with clinical trials, help for managing side effects, memories of our angels, and support for one another. 

If you are interested in connecting through the Facebook Group please connect here or through your Facebook page.