Parents, friends and family members whose loved ones are diagnosed with gliomatosis cerebri are often shocked — not only by the diagnosis but by how alone they feel. Rare cancers don’t have the kind of national support systems one finds with more common cancers, such as breast cancer or lung cancer. Here are some resources and suggestions to help you get started on this journey, and know that you are NOT alone. We in the GC community worldwide are here to help.
We have found that other families can provide the best resources as you navigate this difficult time. The “Parent-to-Parent” program at Weill Cornell can connect you with another family who’s been where you are now. Please call (212) 746-2363 for help.
If you’d like to start your journey by learning more about gliomatosis cerebri, we recommend the following sites:
- Weill Cornell Brain and Spine Center: What Is Gliomatosis Cerebri?
- National Institutes of Health: Genetic and Rare Diseases Information Center
- National Cancer Institute: Brain Tumor Overview
- National Cancer Institute: What You Need to Know About Brain Tumors
Find out about current Clinical Trials at the Weill Cornell Pediatric Brain and Spine Center, plus advice on how to find more clinical trials nationwide.
You might also find it helpful to read some of the patient stories and blogs that families have published to tell their stories:
Joshua Bembo (read his story here, or visit The Joshua Project website)
Elizabeth Minter (read her story here, or visit the Elizabeth's Hope website)
Daryn Clark (An adult GC patient; read his story here)