The CERN Foundation is a collaborative network with a commitment to connecting patients and caregivers – in addition to medical providers – who deal with ependymoma.

This section of our site is dedicated to helping anyone affected by ependymoma connect with the foundation through patient stories and, perhaps most importantly, each other. And by creating more awareness of ependymoma, our hope is to increase public recognition of this rare tumor and the need for clinical studies to improve early diagnosis, standardize treatment and improve the health status of those living with this disease.


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Inspiration Stories

10-Year Spinal Ependymoma Survivor Feels Blessed

Amy shares how her ependymoma tumor was removed from her spine and that led her to pay it forward.

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One in a Million

As an ependymoma survivor for almost 30 years, Katy shares how she coped through treatments and how her life changed.

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Maintaining Hope: Three Decades With Ependymoma

Learn how a patient with an ependymoma in her spine has survived the disease for over 30 years. She shares her treatment experiences and coping tips.

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Miracle Boy Sharing Hope

At age 11, Ian is sharing hope to the world and to those battling ependymoma that need an inspiration.

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Share Your Story

Help others who are going through similar experiences by sharing your ependymoma journey.


Ependymoma Awareness Day 2019

Join the CERN Foundation in Washington, DC, to raise awareness of ependymoma! On May 5, 2019, CERN will mark the eighth Annual Ependymoma Awareness Day.

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Ependymoma Awareness Day 2018

To commemorate the seventh Ependymoma Awareness Day, butterflies were released in Washington, DC by the ependymoma and brain tumor community on May 6, 2018.

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Ependymoma Awareness Day 2017

The ependymoma community dedicated May 8, 2017 as the sixth annual Ependymoma Awareness Day and a butterfly release was held in Arlington, Virginia to commemorate the day.

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Ependymoma Awareness Day 2016

For the fourth annual Awareness Day, a butterfly release was held on Monday, May 2, 2016 in Washington, DC during the National Brain Tumor Society's Head to the Hill event.

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Ependymoma Awareness Day 2015

A butterfly release was held at St. Jude Children’s Research Hospital in Memphis, Tennessee, on May 5, 2015 to commemorate the fourth annual Ependymoma Awareness Day.

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Ependymoma Awareness Day 2014

In an effort to raise awareness of ependymoma, patients, caregivers and medical professionals from around the world dedicated April 10, 2014 as the third annual Awareness Day.

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Ependymoma Awareness Day 2013

Hundreds of brightly colored butterflies covered the skies over St. Jude Children’s Research Hospital as they were released by patients and CERN investigators on April 18, 2013.

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Ependymoma Awareness Day 2012

CERN commemorated Awareness Day with a mass butterfly release that took place at the semi-annual CERN investigator meeting on April 19, 2012.

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Stay Informed with the CERN Newsletter

The CERN Foundation is committed to informing you with the latest ependymoma news and research. Join our mailing list for monthly updates.