- Advocacy & Human Rights
- Health & Medicine
- People with Disabilities
Location1100 Peninsula BlvdHewlett, NY 11557 United States
Public charity dedicated to helping brain tumor patients through emotional and financial support, education, advocacy and raising money for brain tumor research.
Copayment Assistance Program:
Over $8.90 million (as of Nov 1, 2021) for patient assistance
Clinical Trials and Noteworthy Treatments for Brain Tumors: 1st online support group for brain tumors, on Compuserves, in 1993, and moved to virtualtrials.com, in 1996. Became a premier resource for brain tumor information, hosting online support groups, chat rooms, newsletters, articles, and the clinical trial database. Free video of brain tumor conferences in multimedia library on topics important for brain tumor patients.
Brain Tumor Virtual Trial: A study of brain tumor patients, what treatments they had and the outcomes. To identify combinations of treatments that work better (longer survival times, or higher quality of life) than current treatments. Promising combinations tested by our medical advisory board in standard clinical trials. We have a patient navigation program using XINFORM.
Raised money for research, given grants for important research projects, run letter writing campaigns with major impacts for patients, sped up approval for Temodar and Avastin, Dr. Musella testified at the FDA hearing to help get Avastin, Optune and Glialan approved! Convinced Medicare to pay for Temodar as well as Gliadel, currently trying to get a bill passed that will speed up the search for a cure and give brain tumor patients more treatment options quickly!