Connecting the Ependymoma Community

Image. The front of a large Charter of Rights book.

The Brain Tumour Patients’ Charter of Rights & Financial Resources

This Charter has been drafted from the point of view of the brain tumour patient and caregiver with particular consideration for the difficulties which can arise while living with a brain tumour. The Charter has been created through a multi-stakeholder, collaborative and iterative process and is a living document, subject to annual review. It is hoped that this Charter will have worldwide relevance. It is also meant to be a positive tool that can be used by other sectors of the international brain tumour community. The CERN Foundation, along with more than 70 colleague organizations from across the international brain tumor community, welcomed the release of the new Brain Tumour Patients’ Charter of Rights on July 3, 2020.

Learn more about the Charter.

An image of Beth and her family standing in front of a waterfall.

Deciding If and When to Have Surgery for a Spine Tumor

NCI Connect

By Beth

“Looking back, we are so thankful that we took control and got multiple opinions, which should be standard for people with a rare spine tumor diagnosis.”

Beth discovered a tumor in the center of her spinal cord and the only treatment option is surgery. She shares how she found expert care, support, and resources to prepare her for surgery.

Read Beth’s full story.

A family stands with matching shirts at a Signature event.

Upcoming Signature Events

National Brain Tumor Society

One of the many benefits of the CERN Foundation becoming a designated program of the National Brain Tumor Society, is that now you can get involved in NBTS Signature Events and help raise money directly for the Ependymoma Fund.

Here is a list of the remaining events for 2020:

Ft. Worth Brain Tumor Walk - Saturday, November 7th
RVA Brain Tumor 5K - Saturday, November 7th
Phoenix Brain Tumor Walk - Saturday, December 5th
Florida Brain Tumor Race - Saturday, December 5th

View all events. If you register a team or as an individual, make sure to notify the event director that you would like to designate your dollars to the Ependymoma Fund.

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. Under “Direct My Gift to Support,” remember to select the Ependymoma Research and Education Fund.

Make A Gift

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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CERN Foundation PO Box 217 | Zionsville, IN 46077 US