Congress’s recent inclusion of language in the FY2014 budget and appropriations bill for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) urged the federal research institution to address some of the primary obstacles inhibiting the development of new therapies, including the lack of a mouse model, and the shortage of tissue samples.  This language, which was included in both the Senate draft of the Labor HHS Appropriations bill (S. 1284) and the Omnibus Appropriations Conference Report (H.R. 3547), reads:

To Accompany S. 1284, the FY2014 Labor Health and Education Appropriations Act, NIH, NCI:

Slow-Growing Children’s Brain Tumors- The Committee urges NCI to address the shortage of tissue samples for slow-growing children’s brain tumors by incentivizing researchers to centralize and share such samples, and to support the development of preclinical mouse models and other nonmammalian models for pediatric brain tumors. The Committee requests an update on these issues in the fiscal year 2015 congressional budget justification.

To Accompany HR 3547, the FY2014 Omnibus Appropriations Act:

Pediatric Brain Tumors.-The National Cancer Institute (NCI) is encouraged to continue its focus on obtaining high-quality biospecimens for all cancer types and the sharing of tissues for research purposes, while exploring how genetic model and xenograft models can be used for biology studies and drug testing studies. In addition, NCI shall provide an update on the advantages and disadvantages of a time-limited special emphasis panel in the fiscal year 2015 budget request.

“This language urging NCI to increase its emphasis on slow-growing PLGA brain tumors comes at a critical time, as the NCI has reported to Congress that they are making great progress in improving their understanding of this disease,” said AJ Janower, President and Founder of the PLGA Foundation.  “Now that we have a better understanding of the pathways that are active in this disease, it is critically important that we translate this understanding into the development of less toxic and more effective treatments for kids battling PLGA brain tumors.”

Parent advocacy efforts to encourage the National Institutes to turn their attention to this pernicious and orphan disease are beginning to help shine the spotlight on low grade glioma and all children’s brain tumors.  Research is the only hope of giving all children the opportunity to fight for their dreams, not for their lives.