Parent Advocacy Initiatives

House and Senate Appropriations Committee on Health Approve PLGA/JPA Language in 2008 NIH Bill: Families associated with PLGA Foundation and the fightjpa.org website united from across the country to support an initiative to lobby both the House and Senate to include in their 2008 Appropriations Bill to the NIH a request to create a comprehensive research plan focused on JPA and PLGA. The bill has passed in the House and is due to pass in the Senate any day.

With the NIH's spotlight on the disease there should be increased attention in the research community and leveraging of synergies between Institutes and Clinics across the country. From the bill:

"Children's Brain Tumors - Brain tumors are the most common solid tumor type for children, and the leading cause of pediatric solid tissue cancer deaths. The most common forms of childhood brain tumors, affecting patients ages 0 to 19, are Juvenile Pilocytic Astrocytomas [JPA] and other Pediatric Low Grade Astrocytomas [PLGA]. Because current treatments (surgery, chemotherapy and radiotherapy) are invasive, toxic, and cause debilitating side effects/impairments, the Committee strongly urges the NCI, NINDS, NIBIB, and ORD to develop a comprehensive research plan, including specific timeframes, to focus on children's brain tumors, with the goal of identifying alternative, safer and more effective treatments, as well as a cure. The Committee further encourages the NIH to achieve this objective by targeting basic and clinical research, accelerating the enhancement of the Institutes' cancer research portfolios, creating research priorities with a sequential agenda and timeline, and facilitating the coordination and collaboration of organizations (both public and private) already funding related research initiatives."

To see the full language please go to PLGA Senate/House Appropriations Bill Language (scroll half way down the page and look for "Children's Brain Tumor" title).