GLIOMATOSIS CEREBRI CONFERENCE

With the increase in detected cases of Gliomatosis Cerebri and the scarcity of credible information, enhancing global awareness of our Gliomatosis Celebri network becomes increasingly important.

Goal of the GC Conference

To that end, the GC International Conference serves as a dual-purpose forum for families to share information and support, and for medical professionals and scientists to exchange their expertise and collaborate.

The goal of the Conference is two-fold. First, to develop a standard of care for extending the life and comfort of affected patients. The second, and ultimate goal, is to find a cure for Gliomatosis Cerebri. In response to the cry for help from families touched by Gliomatosis Cerebri.

The first GC Conference convened in Paris in March 2015 and now convenes bi-annually. The last conference was held in Maryland last June 2017 and Co-sponsored by the National Institutes of Health (NIH) while the third conference will be by 2019 in Barcelona. These conferences allow families to communicate face-to-face with each other and the numerous medical professionals on the quest to understand and treat GC. This leads to an invaluable exchange of ideas, data, and personal experience. The goals are to reaffirm the long-term commitment necessary to understand GC, to sharpen its focus,  and to plan a strategy for continued financial support from foundations and institutions.

The first two conferences led to a plan developed by clinicians and other researchers to consolidate tissue analysis at two sites: Weill Cornell in NYC and the Institute of Cancer Research (ICR) in London. All samples available will be forwarded to these two sites for genomic sequencing. The sites will then identify mutations in each tissue sample and the mutations the samples have in common,

Identifying common mutations could lead to further research on pharmaceuticals that prevent the growth of tumors in tissue samples with specific mutations; this, in turn, could lead to further research to test the safety and effectiveness of experimental treatments for GC in patients.

The sites plan to study a minimum of 100 tissue samples over the next one to two years. After involved families and foundations were able to spend focused time discussing GC issues at these conferences, now they continue to work together to support GC research.