Here’s a list of my top (in no particular order) resources for brain cancer patients. In this post I offer some reputable, reliable sources of information and give pointers for when you are browsing these websites. This list is non-exhaustive: these organizations are a great place to start.
“The mission of the American Brain Tumor Association is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis. We do this through interactions and engagements with brain tumor patients and their families, collaborations with allied groups and organizations, and the funding of brain tumor research.”
Thoughts: The American Brain Tumor Association (ABTA) is currently investing almost $400,000 in research grants to further progress on the treatment and diagnosis of brain tumors. The ABTA is an extremely informative resource that also hosts fundraising walks, runs, and volunteer opportunities. An interesting feature of the ABTA is it’s charitable shopping option where, by using the Amazon Smile website, every purchase will have a percentage donated to the ABTA.
“National Brain Tumor Society (NBTS) unrelentingly invests in, mobilizes, and unites our community to discover a cure, devlicer effective treatments, and advocate for patients and care partners. “
Thoughts: For the last forty years the National Brain Tumor Society (NBTS) has funded research that aims to treat brain tumors and improve the lives of those affected by brain cancer. Further, the NBTS works to change policy such as advocating for a $3 billion increase in government funding for the National Institute of Health (NIH) and increases in funding for the National Cancer Institute, Peer Reviewed Cancer Research Program, and many more. The NBTS also has a day (Head to the Hill) where advocates from all over the nation head to Washington DC to educate congressional members on the importance of funding research.
“The mission of the American Brain Tumor Association is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis. “
Thoughts: The American Brain Tumor Society realizes its mission through “interactions and engagements with brain tumor patients and their families, collaborations with allied groups and organizations, and the funding of brain tumor research.“ For example, the BT5K is a flexible, fun, safe and interactive fundraising event that has raised over $18 million dollars for research and other services related to brain cancer. There are also freely available educational presentations on brain tumors that cover topics such as cognitive side effects, caregiver coping, and returning to work and school.
“The Society for Neuro-Oncology is a multidisciplinary organization dedicated to promoting advances in neuro-oncology through research and education.“
Thoughts: The Society for Neuro-Oncology hosts multiple events, such as the annual conference and two upcoming events: SNOpeds Conference and Brain Metabolism. SNO also has many grants for research, fellowship matches, and resources to support those in the neuro-oncology field.
“The ANA is a 501(c)(3) nonprofit organization that serves over 3,000 members including acoustic neuroma patients, family members, friends, and healthcare professionals. It is governed by a Board of Directors comprised of patients and family members of patients. Since its founding, thousands of individuals impacted by acoustic neuroma have received comprehensive and non-technical information about AN through the ANA. Information for all stages of a patient’s journey is provided in our quarterly newsletters, information booklets, website, webinars, support groups and patient education events. The ANA is patient-founded and patient-focused.”
Let us know your go-to websites for accurate and helpful information about brain cancer in the comments!