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.
