#GrayMatters - May is Brain Tumor Awareness Month

Updated: May 2, 2020

May is brain tumor awareness month.

And awareness is sorely needed.

Why? Because brain cancer is one of the most deadly and expensive cancers and brain tumor research is chronically underfunded.

Why does that matter? Why does #GrayMatter? And not just in May, but 24 X 7 x 365?

Here's why.

Today, an estimated 700,000 people in the United States are living with a primary brain tumor, and over 79,000 more will be diagnosed in 2018. (Source: National Brain Tumor Society.)

And yet, as stated by the National Brain Tumor Society, "there have only been four (4) FDA approved drugs – and one device – to treat brain tumors in the past 30 years. For many tumor types, surgery and radiation remain the standard of care. There has never been a drug developed and approved specifically for malignant pediatric brain tumors and the four approved drugs for brain tumors have provided only incremental improvements to patient survival, and mortality rates remain little changed over the past 30 years."

That is NOT ok!

Brain tumors don't discriminate. They attack people of all ages, races, genders and geographic locations. No one is immune to this insidious disease. In a day, anyone's world can change.

In addition, when a person of any age, and most dramatically and tragically, a child, is diagnosed with a brain tumor, he or she is facing long-lasting life altering physical, cognitive and psychological impacts. Even benign brain tumors can be deadly. To make matters even more complicated, there are more than 120 different types of brain tumors, and many of those have sub-types.

Our mission at the Children's Brain Tumor Family Foundation (CBTFF) is to help fund research on rare and inoperable pediatric brain tumors. Our belief, and the belief of many experts, is that if we can find a cure or make progress in the treatment of these rare cancers, not only will we change the story for many children and their families, but we will provide invaluable clues and innovative approaches that can be used to treat a wide variety of brain tumors that impact children and adults.

Here is a list of the facts that motivate us. These are the facts that both appall and inspire us. We will never ever give up. We will remain committed to funding the work being done by the brilliant and dedicated teams at the Children's Brain Tumor Project at Weill Cornell. Read more about their work here.

Why We Fight

From the National Brain Tumor Society:

  • The average survival rate for all malignant brain tumor patients is only 34.7%

  • For the most common form of primary malignant brain tumors, glioblastoma multiforme, the five-year relative survival rate is only 5.5%

  • An estimated 16,616 people will die from malignant brain tumors (brain cancer) in 2018

  • More than 28,000 children (0-19 years of age) are estimated to be living with a brain tumor in the US

  • An estimated 4,610 new cases of childhood and adolescent (15-19 years of age) primary malignant and nonmalignant brain and CNS tumors are expected to be diagnosed in 2018

  • The average survival rate for all primary pediatric (0-19 years of age) malignant brain tumors is 73.9%

  • Brain and CNS tumors are the most prevalent form of pediatric cancer in kids under 19

  • Pediatric brain tumors are the leading cause of cancer-related death among children and adolescents ages 0-19, surpassing leukemia.

From the Pediatric Brain Tumor Foundation:

  • There are more than 100 different types of brain tumors, making diagnosis and treatment challenging

  • 72 percent of young people diagnosed with a brain tumor are younger than age 15.5

  • Survival rates for many childhood brain tumors have improved over the past 30 years. However, survivors often suffer from lifelong side effects caused by their illness as well as by treatments such as surgery, radiation and chemotherapy.

  • Among cancer deaths, brain and central nervous system tumors cause the greatest proportion of years of potential life lost (31 percent).

  • Pediatric brain tumors aren’t like those in adults. Children’s brain tumors require specific research and different treatments.

  • Brain tumors are located in children’s control center of thought, emotion and movement, often resulting in long‐term side effects. Survivors can have physical,learning and emotional challenges that will limit their quality of life into adulthood.

  • Nonmalignant (“benign”) brain tumors can be deadly if their location in the brain prevents surgical removal or other curative treatments.

  • Research that focuses specifically on pediatric brain tumors is crucial to saving children’s lives and improving survivors’ quality of life.

Please, join us in our quest to fund the research that aims to change these statistics. All of us at the CBTFF have had our lives turned forever upside down because of a brain tumor (or multiple tumors!) We have suffered and watched our loved ones suffer. Some have lost their battles and earned their wings, others are still fighting.

Join us. Join the fight. Because #GrayMatters365. Donate now or get involved in other ways. Questions? Contact us.


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