Ependymoma Awareness Day — Virtual Community Gathering
As a part of Ependymoma Awareness Day, the National Brain Tumor Society and the CERN Foundation hosted a virtual meeting on May 10 for ependymoma survivors and care partners to support, share, and connect. This special opportunity was designed to inspire and empower, serving as a reminder that having a rare disease does not mean you are alone. More than 25 ependymoma survivors, care partners, and advocates came together to participate in this important effort! Participants were encouraged to share what Ependymoma Awareness Day meant to them and how they were recognizing the day. The virtual session was a special time to connect with others in the ependymoma community, fostering powerful and emotional moments among attendees.
Jenna, one of the meeting participants, commented, “Today I attended a Zoom run by the CERN Foundation where 25 individuals suffering from ependymoma shared their stories of heartache, bravery, and hope. It was empowering, meaningful, and the most understood I have felt in three years. It was my first time ever attending and honestly left me emotional. I’ve always felt alone with my condition and this meeting eased that pain.”
Support groups like this are a great way to help patients and care partners to find connection. NBTS offers monthly Brain Tumor Support Conversations
and Grief Support
virtually for anyone looking to get involved in your support community, not only for your benefit but to be an inspiration to others going through their own brain tumor journey.