National Brain Tumor Society is the largest nonprofit organization dedicated to the brain tumor community in the United States. We are fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and those who will be diagnosed tomorrow.
As the only brain tumor organization with a Chief Scientific Officer and Director of Public Policy, we partner with leading experts in academia, industry, and government to understand the current challenges which have slowed progress, as well as identify the opportunities for scientific advancement and collaboration. This knowledge drives us to fund only the most promising areas of research and fight for policies that will support therapeutic progress and development, and provide better access to essential health care services for all brain tumor patients.
- Funded six (6) dynamic teams for feasibility studies using a systems biology-based research approach in phase one of the multiyear, $5 million Mary Catherine Calisto Systems Biology Initiative. The teams, comprised of experts in biology, engineering, and mathematics, are taking advantage of the vast amounts of genomic data now available especially data on glioblastoma multiforme from The Cancer Genome Atlas, to better understand brain tumors.
- Announced the Chairs of Research to support the six (6) Mary Catherine Calisto Systems Biology Initiative grants, as well as the advanced grants awarded for the study of glioma and medulloblastoma.
- Gathered the world’s leading researchers for the symposium, Stepping up to the Complexity Challenge: the Systems Biology Era of Cancer Research at our annual Summit event in Philadelphia.
- Awarded Developmental Neurobiology grants to three (3) leading researchers focused on the discovery and development of effective therapies for pediatric brain tumors, which significantly extend the lives of patients without delivering long-term adverse effects. This is a continuation of our Pediatric Brain Tumor Research, and is in cooperation with the Brain Tumour Foundation of Canada.
- Educated the federal government and Members of Congress on the impact of their proposals to the brain tumor community, for the Patient Informed Consent rules, Affordable Care Act, NIH funding, and pediatric brain tumor research.
- Joined the One Voice Against Cancer Coalition (OVAC), a group of the 40 largest cancer patient organizations in the country, to fight for cancer research funding.
- Through our national events program of Brain Tumor Walks, Races and Rides, we rallied more than 35,000 participants across the United States to raise more than $7 million to fund promising research.
- Created the Community Research Fund model to support those individuals and groups who are interested in research, which targets specific tumor types. Contributors can pool donations and use our administrative process, staff knowledge, and team of highly experienced, nationally recognized scientific experts to determine the best research to support. The first Community Research Fund, for Oligodendroglioma has been established and already surpassed its goal of reaching $300,000.
- Recognized Angiochem of Montreal, Canada, with the Innovation Recognition Award, for their progress in developing novel brain tumor treatments capable of crossing the blood-brain barrier.
- Established a rapidly growing base of advocates across the United States to support awareness of brain tumors and educate their local elected officials of the needs of this community. Since the beginning of 2011, the number of advocates has grown by more than 600%.Empowered patients and caregivers with information and connections to others in the brain tumor community at the Patient and Family Program, “Brain Tumor 101: Your Personal Walk Through Survivorship.”
- During Brain Tumor Awareness Month, brain tumor patients and caregivers from across the country came together for our annual advocacy day to educate Members of Congress onthe needs of the brain tumor community - including access to care and continued funding for much-needed research.
- Our advocates successfully persuaded their Senators to sign on to a letter of commitment to maintain NIH funding during the federal budget negotiations, which were then supported by Congress in fiscal year 2012.
- Educated patients, families, and caregivers with vital brain tumor information through our website and monthly eNewsletter, Transforming Tomorrow, Today. Our website, www.braintumor.org, receives almost 1,000,000 unique visitors each year.
- Partnered with and mentored organizations that provide patient support, such as Imerman Angels 1-to-1 Cancer Support.
- Earned another four-star rating from Charity Navigator, America’s largest independent charity evaluator.
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National Brain Tumor Society takes great pride in our financial efficiency and accountability, and we work to maximize the value of every dollar we receive. Contributions to us are tax-deductible to the extent permitted by law. We are a nonprofit 501(c)(3) organization (EIN/tax ID number: 04-306-8130). Financial Statement
IRS Form 990
Specific information about the National Brain Tumor Society's finances is available on our Form 990, the information return that tax-exempt organizations file annually with the Internal Revenue Service (IRS). Please note, our fiscal year changed in 2011. To accommodate this change, we filed two (2) Form 990s for the time periods of October 1, 2010 - September 30, 2011 and October 1, 2011 - December 31, 2011.
IRS Letter of Determination