The 1st International Conference on Gliomatosis Cerebri was held in Paris on March 26th & 27th, 2015. It was a groundbreaking event, bringing together over 35 of the top physicians and scientists from North America and Europe, for the first time to focus on Gliomatosis Cerebri. The families and foundations that attended, spent focused time together sharing information on our loved ones, information on our foundations, and shared many fundraising ideas. We talked about how we could make additional connections with others touched by GC and how to work together to create a structure to financially support the work coming out of this conference. With the commitment of the physicians and scientists in attendance, and through the support of all of you, we will be able to make a difference for this disease, which has impacted so many loved ones in different parts of the world. A decision was made by the MDs & the scientists attending, 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 sequencing. This analysis will identify mutations present in the tissue samples, with the goal of identifying common mutations across the samples. The identification of common mutations would lead to further research and provide information which is not available today, which could be used to test new treatments for GC. The goal is to analyze a minimum of 100 tissue samples over the next one to two years. A further decision was made to support one International GC Registry, to use the GC Registry which is already online through Weill Cornell. All patients and physicians should be directed to the GC Registry. The GC Registry will be utilized as the central source for clinical annotation, central radiologic and histologic review, Tissue banking (DNA, RNA, etc).
- Vidhu