Every year over 3,000 children are diagnosed with a brain tumor, 75% of those children will be under the age of 15. Forty thousand adults and children will be diagnosed with a brain tumor each year. Of those, 33% will only survive for five years. The other 67% survive, but will have long term side effects. 

 

Each tumor and patient (children and adults) is different, so the treatments will vary. Even if the treatments are successful, they still leave the patient with scars. My sister Misha has scars on her right calf and thigh, on her chest and stomach, the back of her neck, and on her scalp. You can just look at her and see the damage each treatment did to her body, even though the tumor was removed.  I have put together a website to help families who have family member that suffers from a brain tumor.  It is called Get Through It Together (getthroughittogether.weebly.com). 

On average 15-20% of the millions of dollars raised by brain tumor foundations actually go to research. A good portion goes into administrative tasks rather than research. The CEOs and board members often make more money than what goes into brain tumor research. 

 

However there are many organizations where their senior staff and board members do not take a penny for their efforts.  For example The Kortney Rose Foundation (http://www.thekortneyrosefoundation.org/) puts 95% of all raised funds into research.  The National Brain Tumor Society (http://www.braintumor.org/) is another great role model. These two amazing organizations are the ones we want to emulate.

 

However Congress does not have the same passion as Get Through It Together (getthroughittogether.weebly.com) or the Kortney Rose Foundation.  It is sad to say but few members of Congress actively support brain tumor research or participate in raising funds.  Congresswoman Barbara Lee and Congressman Steven Rothman are two members of Congress that do stand out. However that is not enough.  According the National Institute of Health, the Federal Government (specifically NIH) will spend approximately $280 million this year on research. That is enough considering the rising cost of healthcare.

 

Congress can help by increasing their grants for brain tumor research for the National Institute for Health and the National Cancer Institute. They need to maintain investments so more treatment can found for brain cancer.  And hopefully one day a cure.

Additionally we need find ways to enhance the quality of life of these men, women, and children that suffer from this horrible disease. In addition we need research and more funds to make their lives easier.  I do not think Congress or the President truly understands what each one people go through every day.  The scars they carry.  The nausea they feel.  Each day they feel different, not the feeling the way they were before the tumor because the treatments can hurt as much as the tumor. 

 

My sister has had three brain tumor resections, a Ventriculoperitoneal shunting, about a dozen other supportive surgeries, 5200 centigrays of radiation (trust me that is a lot), chemotherapy, and bone marrow and stem cell transplant.  She carries the scars both on the outside and inside from her treatments.  And she is not alone in this.  Most people with brain tumors carry the same scars

 

I am asking Congress to put more money into research to cure brain cancer and find better ways to enhance our family members that suffer from the disease and at times the treatments themselves. I am asking you to sign this petition and then call your local member of Congress and Senator (202-224-3121). 

 

Tell them to END BRAIN CANCER NOW. Put more money into Research.  $280 Million is not even a drop in the bucket.  It is not enough compared to the wasteful spending that has been going all these years.  We need to make sure that no other person suffers from a brain tumor again.

 

END BRAIN CANCER NOW.