Ependymoma Community Raises Awareness For Rare Disease

Guests at the Head to the Hill welcome reception stand together before opening butterflies that they will release together.

Patients, care partners, and medical professionals from around the world recognized May 10, 2023, as the 12th annual Ependymoma Awareness Day!

On Ependymoma Awareness Day, virtual programming included footage from the Head to the Hill Welcome Reception and CERN Butterfly Release Ceremony in Bethesda, Maryland, as well as video updates from ependymoma scientists Kendra Maass and Dr. Sriram Venneti. This event was held in connection with Race for Hope DC and Head to the Hill, the flagship advocacy event for the National Brain Tumor Society. Brain and spinal cord community members in attendance included medical professionals, advocates, patients, and care partners.

Watch the 2023 Ependymoma Awareness Day Video »

Two smiling, young women stand together in anticipation of releasing their butterflies.

Thank you for your support!

Hundreds of butterflies were released in honor or in memory of loved ones with ependymoma, to recognize care partners, and to support ependymoma research. The delicate and beautiful butterfly was chosen to represent the spirit of the ependymoma community as a symbol of hope through change.The butterfly release was photographed and videotaped so that supporters around the world can participate and share in this moving event.

View the butterfly release photo gallery »

Amazing art created by supporters of CERN - a butterfly flying in a stream of other smaller butterflies - a symbol that we are all together and no one is alone.

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.

Learn more about Support Services »

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.

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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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