The prognosis for gliomatosis cerebri remains poor. Treatment with chemotherapy and/or steroids may stabilize the disease and prolong life, but the cancer is invariably fatal, usually within one to three years.
Other, more common, childhood cancers once thought to be incurable, such as leukemia, have seen remarkable improvements in survival rates over the past 30 to 40 years, as researchers unlocked their secrets and found effective treatments. But there has been very little research into pediatric brain tumors, because it’s so difficult to get funding for it.
Government grants and gifts from major foundations tend to support common cancers, where each advance benefits thousands of people. That makes sense, of course. But how can you tell a parent that not only is there no hope for their child, but that nobody is even working on it? The only way to improve the prognosis for gliomatosis cerebri and other rare and inoperable brain tumors in children is to study them, get to understand them better and test innovative therapies for them.
That’s what the GC Registry is all about — collecting and studying the data so desperately needed to advance the research and improve the odds.