When many of us started this journey, we were alone. Having never heard of GliomatosisCerebri, many of us reached out to the internet and social media to find information on where research was being done, and meet others on the same path. What we found was that information was very limited. There was no research being done and no community of GliomatosisCerebri families.  This has now changed, and in addition to having this website now available, there is a Facebook Group, “The GC Connection” and now an internationally connected community. The GC Connection is a network of people who have been touched by GliomatosisCerebri. It is a closed Facebook Group where we come together to share information on ourselves and our family members, including updates, struggles, treatment options, research and fundraising initiatives. The FB group was created by Stacey Gravina, a mother who lost her son to GC. With GliomatosisCerebri such a rare disease, it is through The GC Connection where we find others who have shared our most similar experiences. We are a diverse group of families, with members currently being treated as well as those who are honoring their angels. We have members from many different parts of the world, and provide support for each other in many different ways. If you or someone you know has been touched by GliomatosisCerebri, please share our information with them. The GC Connection wants to make a difference in any way possible… advocacy, support, fundraising, awareness.

Mouse over each pin to discover family, partners, or research centers.