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

— Categories: Ependymoma Community     Posted on September 24, 2021

A collaborative exercise to raise awareness of the unique issues facing a rare brain and spinal cord tumor community.

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.

Brain Tumour Patients’ Charter of Rights History

On July 3, 2020, the National Brain Tumor Society (NBTS), along with more than 70 of our colleague organizations from across the international brain tumor community, welcomed the IBTA’s release of an updated Brain Tumour Patients’ Charter of Rights. The document represents the perspective of brain tumor patients and caregivers and provides a set of standards for the healthcare experience to which all brain tumor patients and caregivers should be entitled — wherever they reside — while they navigate their treatment and live with this devastating disease. 

This advocacy-based document creates a framework to help initiate positive change in the care of people diagnosed with brain and central nervous system tumors around the world. Ultimately, the goal of The Brain Tumour Patients’ Charter of Rights is to achieve the best possible health and quality of life for adults, children, and adolescents living with brain tumors by encouraging and supporting quality standards, policies, and practices. It can be used both by professional organizations and advocacy groups as a guide for the achievement of strategic objectives to better serve the brain tumor community, and by individuals and patients to underpin particular aspects of their care. 

In preparation for the 2021 Ependymoma Awareness Day virtual program, Kim Wallgren, Executive Director of the CERN Foundation, a program of the National Brain Tumor Society, 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.

Daniel Leach commented: “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.” 

Creation of Ependymoma Key Issues

The initial meeting of the Ependymoma Advocacy Groups (EAG) in March of 2021, included foundations that focus specifically on ependymoma, organizations that are led by an individual with a direct connection to ependymoma, and online support groups, all of which had a previous relationship with the team at the CERN Foundation and the National Brain Tumor Society. The EAG set out to identify and prioritize five key issues as a starting point with the intent to build on those initial key issues in the future. 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 TommyStrong Foundation, Danielle Leach, Rachael Kittleson, and Kim Wallgren from the National Brain Tumor Society. In addition, Chas Haynes from the Society for NeuroOncology and Kathy Oliver from the IBTA joined the discussion and provided feedback. 

Through online discussions, surveys, and multiple rounds of editing, the group was able to distill the initial ideas into four key issues along with a summary statement. Each participant contributed important experience and feedback that helped to shape each issue. The final Ependymoma Key Issues were released on the 2021 Ependymoma Awareness Day virtual program through the voices of the contributors themselves. Ependymoma Advocacy Group members submitted videos of themselves or a stakeholder reading one Ependymoma Key Issue. In addition, a creative graphic was designed in order to share and distribute the Key Issues document through professional and patient channels as a means to raise awareness about the effort.

Different Approach Needed for Rare Disease Advocacy 

Relationships are key to any collaboration. In addition, when focusing on rare disease advocacy, it is imperative to think outside the box of traditional nonprofits and organizations. For example, CERN has been collaborating with Tamiko Toland and Bruce Blount for years. Both of these individuals lead online support groups that aren’t traditional 501c3 organizations or formal groups with a budget and staff. However, they make a tremendous impact in the ependymoma space and have unparalleled experience with ependymoma as a rare disease. Input from Tamiko Toland and Bruce Blount is vital to any activity designed to raise awareness and impact change and illustrates the need to include non-traditional efforts if we are going to capture the true nature of this community.

Though differences exist between the diagnosis and treatment of adult and pediatric ependymomas, when representatives from these respective populations work together the collective advocacy voice for the ependymoma community benefits. Together, we are able to make a larger impact while also beginning to bridge the gap and represent the young adult population into which many ependymoma survivors fall. 

This Ependymoma Key Issue effort serves as a critical example for other groups that are looking for a launching point to address how their unique challenges and opportunities fit within the larger narrative needs of the global brain tumor community. It shows how even disparate groups with limited resources can band together, leverage existing infrastructure and create a meaningful advocacy and awareness effort.

“With some frequency, we talk with advocates and community members and they ask, ‘Why hasn’t this been done before?’,” says Kim Wallgren. “Chances are it has or has at least been attempted. We need to take the time to evaluate and understand what already exists out there and work with groups to customize the effort to the unique needs of your group or organization, without duplicating efforts. When you focus on a rare disease, you are forced to look for opportunities to join larger efforts, while keeping the important independent focus at the forefront of decisions and strategy. By the nature of rare disease work, we have to collaborate and rely on each other and that is best done within a community built on trust and mutual respect.”

It is intended that The Brain Tumour Patients’ Charter of Rights will be reviewed and updated periodically. NBTS will continue to sit on the Charter drafting committee to contribute to this update and review process. Other organizations can still sign on as supporters of the Charter and will be added on a rolling basis. Likewise, a date and version number were included on the first iteration of the Ependymoma Key Issues because like the Charter, the content was developed through a multi-stakeholder and iterative process and is a “living document”, subject to annual review. We hope to build out these key issues and possibly add further criteria to support the unique challenges experienced by those affected by ependymoma. 

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