NIH/NCI Funding for PLGA Children's Brain Tumor Research

SIGN THIS PETITION IF YOU ARE IN FAVOR OF NATIONAL CANCER INSTITUTE'S GOVERNMENT FUNDING FOR A CHILDREN'S BRAIN TUMOR CURE for every child, teenager and youth.  Did you know.....  

1.  Pediatric brain cancer has overtaken all other forms of cancer as the number one cause of cancer-related death in children and youth.

2. Current treatments for the most common form of brain tumors in children and youth (known as Pediatric Low Grade Glioma or Pediatric Low Grade Astrocytoma OR PLGA) has not changed in 20 years. Children can and do die from PLGA and yet this disease falls under the "rare disease" or "orphan" cancer umbrella and therefore has been totally neglected in research funding

3.  Current chemotherapy treatments are highly toxic,  relatively ineffective, and often cause serious permanent damage to these children. 

4.  There is new promising genetic research, smart drugs and targetted therapies which have been  been developed for  adult  cancers, but less than 5% of the National Cancer Institute  budget is used for pediatric cancers, and only the smallest percentage of 5% used for children's brain tumors.  

5. Even with evidence that adult melonoma and PLGA share the same gene and pathway, and even with a successful adult melonama drug cleared for pediatric trial usage, there are no pediatric trials for this drug being funded.  (PLGA also shares commonalities with ovarian cancer and other children's brain tumors, but still no research has been funded to date.)

6. If you believe that A CHILDREN'S BRAIN TUMOR CURE is essential for EVERY child, and that the National Cancer Institute should fund research for EVERY child with a brain tumor, YOUR SIGNATURE can make the difference.

SIGN THIS PETITION SUPPORTING RESEARCH FOR A CHILDREN'S BRAIN TUMOR CURE.

EMAIL THIS PETITION TO YOUR EMAIL CONTACT LIST.

Children can't sign petitions and advocate for themselves, but YOU can. 
We the undersigned write to urge you to invest in a cure for pediatric low grade astrocytoma brain tumors (the most common form of childhood, and youth, brain tumor) in the upcoming NCI budget.

Pediatric brain cancer has overtaken other forms of pediatric cancer as the number one cause of cancer-related death in children.  Yet despite this, treatment options available to pediatric low grade astrocytoma patients have not changed in 20 years.  Existing treatments are invasive, highly toxic , relatively ineffective and, according to experts in the field, cause serious permanent damage, often life-threatening.  Furthermore, the impact does not stop at the patient level, but spills over to additional issues related to the patient's siblings, families and cost to the healthcare, education and employment systems.

Feedback regarding lack of progress in PLGA treatments from frustrated clinicians has been overwhelming - doctors in the field are desperate for new options for this disease which affects the majority of their patients.  We are assured by the scientific/medical research community that they are poised to make rapid progress in finding more effective, and less toxic treatments for PLGA...if funding were available.  Everyone is in further agreement that current invasive procedures (i.e., surgery, radiation and chemotherapy) could be reduced and the mortality rate could be significantly decreased if there were targeted therapies or "smart" drugs, similar to those developed for other childhood cancers, available.

Furthermore, while research on PLGA promises to help thousands of children both here and abroad, importantly it also promises to enrich our understanding of other types of cancers, such as melanoma, ovarian cancer and other pediatric and adult brain tumors, which share many common characteristics with PLGA and which stand to benefit by the relatively "clean" genomes of children which will provide significant new insight leading to treatment advances in these other pediatric and adult cancers.

In 2008, the NIH Appropriations Bill made a request for the NIH to create a comprehensive research strategy with the goal of identifying alternative, safer and more effective treatments as well as a cure for PLGA.  The NIH/NCI/NINDS/NIBIB/OAR authored a collaborative response in September 2009 entitled "NIH Research Plan for Children's Brain Tumors" indicating that it would create such a plan, however, to the best of our knowledge there has been no funding allocated to move this agenda item forward.

Billions of dollars are spent each year on cancer treatment and research, but studies and drug development specific to pediatric brain cancer remains woefully underfunded.  Even the NCI, allocating less than 5% of it's annual budget to pediatric cancer, allocates an even small amount to pediatric brain tumors.  

The time has come for the NCI to move PLGA brain tumor research to the top of the NCI's cancer research agenda, unlocking important insights applicable not just to PLGA but to the whole cancer field.

We urge you to include a budget line allocated to this disease in the upcoming NCI program budget.  Our hope rests with you - bring the resources of the NCI to bear to ensure that our PLGA children can fight for their dreams, not for their lives. 

The time for funding is NOW!
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