January 24, 2025 – The reported pause in public communication and the grant review process at the National Institutes of Health is a worrying sign for the pediatric brain tumor community. The Pediatric Brain Tumor Foundation is monitoring the situation and remains committed to advocating for the families we serve. PBTF will continue to work with legislators on all levels to ensure that our research continues without disruption and that families can access life-saving clinical trials.
Many of our brilliant research partners rely on government funding through NIH grants to further their work. Any pause in financing these teams could have a devastating impact on pediatric cancer research and our families. The private-public partnership that powers pediatric cancer research in the United States has led to countless breakthroughs and is a point of national pride.
“The United States is a bright light across the entire world, funding more research and providing more insights into the nature of childhood brain cancer than any other country on the globe. Funding through the National Institutes of Health is a critical piece of this amazing American productivity. I look forward to the NIH continuing to lead the world towards an era where children and their families do not have to walk this terrible road.”
–PBTF research partner Michael Taylor, MD, PhD, The Cyvia and Melvyn Wolff Chair of Pediatric Neuro-Oncology, Texas Children’s Cancer and Hematology Center.
Patient advocacy groups cannot ensure that patients’ voices are heard without the ability to communicate with NIH officials. Furthermore, information about clinical trials will not be shared, which could cause patient enrollment to decline. Open communication with the NIH is critical to improving health outcomes for our kids.
“Every day counts for children battling high-risk cancers. Delays in research funding and communication are unacceptable. We must put politics aside and prioritize the health and well-being of these children.”
– Scott Kennedy, Vice President of Medical Stewardship & Research, Pediatric Brain Tumor Foundation
“Having been on this journey for 10 years with a brain tumor that doesn’t cooperate like the typical JPA, we rely solely on the amazing research focused on brain tumors. Caroline has been on four or more clinical trials in her ten years, and thankfully, these trials have allowed us to learn more about her tumor; they have given her extended time and more options to consider as we continue to run this marathon. My daughter’s life depends on scientists doing their best to find healthier and safer options that are effective on tumors that have targeted mutations like Caroline’s. We feel incredibly blessed by this continued research and support coming from places like NIH. Without it, we would be living a very different life.”
– Camille, pediatric brain tumor caregiver and Caroline’s mom
We hope that any additional delay in research funding can be avoided and lines of communication with the NIH will be reopened as soon as possible. For information about how you can help, please visit curethekids.org/advocacy
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