New Ependymoma Research Project

Image. Dr. Chan Chung works in his lab alongside another researcher.

CERN Seed Grant Launches New $3M Ependymoma Research Project

Discoveries from the 2020 CERN Robert Connor Dawes Pediatric Fellowship, supported by the National Brain Tumor Society, to Dr. Chan Chung in Dr. Sriram Venneti’s laboratory at the University of Michigan were instrumental in helping to win an esteemed $3 million R01 grant from the National Cancer Institute (NCI).

The grant, titled “Targeting integrated metabolic and epigenetic pathways in childhood ependymomas,” aims to address significant gaps in our understanding of posterior fossa ependymomas (PFAs) and lay the groundwork to develop effective treatments.

An R01 grant is the traditional mechanism used by the National Institutes of Health (NIH) and NCI to fund biomedical research. As the leading advocacy organization in the brain tumor community, NBTS consistently speaks up for increased government funding for brain tumor research grants, critical policy changes to support greater research, and more. Through initiatives like the annual Head to the Hill advocacy day on Capitol Hill, NBTS has led successful efforts to increase budgets at the NCI, which directly impacts the availability of R01 dollars.

Learn more about this exciting effort.

NCI-CONNECT leads Survivorship Care in Neuro-Oncology Workshop

The CERN Foundation, a program of the National Brain Tumor Society, proudly endorses the “Proceedings of the Survivorship Care in Neuro-Oncology Workshop” sponsored by the Comprehensive Oncology Networking Evaluating Rare CNS Tumors (NCI-CONNECT), which summarizes a two-day workshop held virtually on June 20-21, 2021, addressing the advancement of survivorship care for people living with primary central nervous system cancers.

The CERN Foundation was an essential participant during the workshop, which was co-chaired by Terri Armstrong, PhD, Heather Leeper, MD, and Mark Gilbert, MD, of the National Cancer Institute, Center for Cancer Research, Neuro-Oncology Branch. During the workshop, expert panels and small working groups provided recommendations and identified strengths, weaknesses, opportunities, and threats to survivorship care’s advancement in neuro-oncology, ultimately informing six action items. These action items address access and reimbursement barriers, expand patient and provider education, develop core competencies, and support survivorship research through funding and other support.

Read the full article.

Image. The capitol building glows in the night down in Washington DC.

Legislative Update: President Biden Signs the PACT Act

CERN Foundation and the National Brain Tumor Society applaud President Biden for signing the Honoring our PACT Act into law. This important bill, also known as the Honoring our PACT Act, includes critical provisions to meet the health care needs of veterans who were exposed to toxic burn pits in the course of their service.

While there is no proven connection between toxic exposures during service and brain tumor diagnoses, the Honoring our PACT Act will expand veterans’ access to health care after these exposures and strengthen research so we can better understand any connection that does exist. Among other provisions, it will:

Add brain cancer as one of 23 new conditions on the VA’s list of service presumptions for post-9/11 veterans, which entitles the diagnosed veteran to disability compensation
Direct the Secretary of Veterans Affairs to conduct studies on the mental and physical health impacts of toxic exposures, including any potential connection to brain tumors
Expand VA health care eligibility to post-9/11 veterans, over 3.5 million of whom have had toxic exposures

Read NBTS’s full statement.

Support the Ependymoma Fund for Research and Education

With your generous support, we will continue to expand our efforts to improve the care and outcome of people with ependymoma.

Make A Gift

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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