Read Lisa and Brooke's story, developments in Metformin, & news in research
Read Lisa and Brooke's story, developments in Metformin, & news in research
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Inspiration Story: Keep Focused and Stay Strong

Image. Brooke and her mom, Lisa, share their inspiration story.
A desperate mother in the UK fights for treatment options for her young adult daughter with spinal ependymoma. This remarkable story between care partners, the CERN Foundation, medical providers and ependymoma experts shines a light on the importance of connection and the impact it can make in a person’s life. Brooke’s mother Lisa explains “We researched in great depth for any other possible treatments for Brooke and would have gone to the end of the earth for her. We happened to read in great depth about the CERN Foundation and how this prospective phase II clinical trial could target the HER2 proteins common in ependymoma tumours. We discovered that this treatment, with demonstrated clinical activity with objective responses and prolonged disease control associated with disease-related symptom improvement, could be actually an option for adult patients with recurrent ependymoma.”

Dr. Chan Chung’s Fellowship Work Supports Recent Publication

Metformin, a drug commonly prescribed against diabetes, holds promise against ependymoma in laboratory studies, an international team of researchers led by the University of Michigan Health Rogel Cancer Center reported in Science Translational Medicine. Experiments that uncovered new understandings of group A posterior fossa ependymomas — or PFAs — led the research team to the potential new treatment approach. This work was supported by the National Brain Tumor Society through the CERN Foundation Robert Connor Dawes Scientific Fellowship award to Dr. Chan Chung in Dr. Sriram Venneti's laboratory.

CERN-funded research and NBTS advocacy culminates in $6M in government funding to develop treatments targeting fusion found in 70% of supratentorial ependymomas

Dr. Holland and Dr. Gilbertson are teaming up yet again — this time equipped with a prestigious grant from the National Institutes of Health (NIH) called a “U54,” as well as even more expert collaborators. Unlike its smaller, traditional cousin, the R01 (the standard NIH grant mechanism), U54 grants provide major funding to foster multidisciplinary and collaborative research. Their U54 will provide Drs. Holland and Gilbertson $6 million for a “full range of research and development” activities to identify drugs that can target the functions of the RELA-C110rf95 gene fusion.
The availability of the U54 grant, itself, is the result of the advocacy efforts of the National Brain Tumor Society (NBTS) and others who helped launch then-Vice President Biden’s “Cancer Moonshot” in 2016. NBTS’s chief executive officer, David Arons, served as a member of the Blue Ribbon Panel of experts that advised and made recommendations for the Moonshot’s implementation and Danielle Leach, NBTS chief of community and government relations, served on the Moonshot’s pediatric working group. One such recommendation was for an initiative to “Intensify Research on the Major Drivers of Childhood Cancers.” It was through this initiative that the NIH and National Cancer Institute developed a “Fusion Oncoproteins in Childhood Cancers” consortium and made the U54 grants available. Drs. Holland and Gilbertson and their team are the only group focusing on pediatric brain tumors to receive funding within this consortium. Congress has continued to fully fund the Moonshot and its projects each year since its inception, thanks in large part to the ongoing advocacy work of NBTS and other groups, including CERN Foundation volunteers who join with NBTS at the annual Head to the Hill advocacy day each year.
This is a remarkable stride for the brain tumor community, demonstrating the importance of private philanthropy, public policy advocacy, government research funding, and team science converging to create a major opportunity for brain tumor researchers and paving the way for new treatment possibilities in the future.
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Your support is critical to ensuring the urgent, unmet needs of the brain tumor community continue to be heard and addressed. Together, we can advocate for patients and families today, while fueling research with the potential to become the breakthroughs of tomorrow. Designate your gift to directly support the Ependymoma Fund for Research and Education with the CERN Foundation.
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The CERN Foundation and the National Brain Tumor Society have joined forces to help people with ependymoma and advance ependymoma research toward the development of new and better treatments through the creation of the Ependymoma Fund for Research and Education. Today, the CERN Foundation is officially a designated program of the National Brain Tumor Society. Donations to the Ependymoma Fund for Research and Education will be made on the NBTS website and used to support research efforts that will benefit both ependymoma patients and research through CERN. Emphasis will be placed on CERN’s historical model of supporting work that translates basic science into clinical practice. The Fund will also address overcoming barriers to clinical trial accrual and the development of new clinical studies for ependymoma patients. Additional funds will be used to support educational efforts through print, media, and awareness events. The new collaborative Ependymoma Fund will continue CERN’s practice and tradition of involving and collaborating with other scientists, medical providers, foundations and supporters of ependymoma research.
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