Ependymoma Key Issues in Brain Tumour Magazine, and get Informed in 30
Ependymoma Key Issues in Brain Tumour Magazine, and get Informed in 30
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Ependymoma Key Issues Article featured in the 2021/2022 edition of Brain Tumour Magazine, published by the IBTA

Image. A chart with Ependymoma Key issues including educaiton and awareness, clinical coordination, transparency, survivorship, and support.
Ependymoma is a rare tumor of the brain and spinal cord that affects both children and adults. A collaborative effort between ependymoma advocacy groups across the world was organized in order to prioritize and articulate the unique key issues facing the ependymoma community. The Ependymoma Key Issues tie into the International Brain Tumour Alliance (IBTA)-initiated Brain Tumour Patients’ Charter of Rights in order to amplify the voice of the ependymoma community within the larger brain and spinal cord tumor community and international medical professional network in a cohesive and unified format.
In preparation for the 2021 Ependymoma Awareness Day virtual program, Kim Wallgren, Executive Director of the CERN Foundation (Collaborative Ependymoma Research Network), a program of the National Brain Tumor Society (NBTS), sought to further engage the ependymoma community in discussions based on the ideals set forth in the Charter. Following the suggestions of her colleague Danielle Leach, Chief of Community and Government Relations at NBTS, who played a role in the recent updating of the Charter, Kim Wallgren set out to develop key issues unique to the ependymoma community that tied into the larger international effort. Danielle Leach said: “The opportunity to convene these groups to develop a set of issues unique to the ependymoma community sparks the advocacy efforts to create real change for this community. The robust discussion and input by these groups developed a strong statement of key needs. Basing their principles on The Brain Tumour Patients’ Charter of Rights illustrates how the Charter can be a catalyst for coalescing communities and rights-based advocacy efforts.”
The international group included Allyn Campbell from the PNOC Foundation, Liz Dawes, Kim Wark, and Cheri McCusker from the Robert Connor Dawes Foundation, Tamiko Toland from Ependy Families/ Ependy Parents, Bruce Blount from the Adult Ependymoma Online Support Group, Linda Rickford from the Astro Brain Tumour Fund, Christine and Andrew FitzPatrick from the Tommy Strong Foundation, and Danielle Leach, Rachael Kittleson, and Kim Wallgren from the National Brain Tumor Society. In addition, Chas Haynes from the Society for Neuro-Oncology (SNO) and Kathy Oliver from the IBTA joined the discussion and provided feedback.

Watch Informed in 30:
Pediatric Brain Tumors

This year, the National Brain Tumor Society launched a new video series designed to give you — our patients and caregivers — everything you need to know about cutting-edge advancements in brain tumor research and treatment. Watch the latest installment of Informed in 30 — Pediatric Brain Tumors — which highlights recent critical findings, and stay tuned this Friday for the next Informed in 30 on Brain Tumor Imaging.
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With your generous support, we will continue to expand our efforts to improve the care and outcome of people with ependymoma. Under “Direct My Gift to Support,” remember to select the Ependymoma Research and Education Fund.
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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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