Awareness

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

Ependymoma and Me

Leah was only 13 years old when she was diagnosed with ependymoma in her spine. Read her honest story of dealing with life after diagnosis. Leah’s experience inspired her to create a blog to share the realities of being a disabled woman living with pain.

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Retiree Overcomes Challenges with Diagnosis, Surgery, and Recovery

Rusty experienced symptoms related to spinal ependymoma for years before he received an official diagnosis. Even though it is a slow process, he is working hard towards recovery and hopes to see more improvements in the future.

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Always Smiling

Dontrell's mother, Charmaine, shares their story with an ependymoma diagnosis.

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Press Forward

During a family trip, Jill knew something was seriously wrong when she started experiencing multiple different neurological symptoms. Jill offers encouraging advice about pressing forward during obstacles and the power of connecting with others.

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Share Your Story

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



Events

Ependymoma Awareness Day 2021

Patients, care partners and medical professionals from around the world dedicate May 10, 2021 as the tenth annual Ependymoma Awareness Day!

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Ependymoma Awareness Day 2020

On May 3, 2020, CERN held the ninth annual Ependymoma Awareness Day with a virtual butterfly release.

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Ependymoma Awareness Day 2019

Patients, caregivers and medical professionals from around the world dedicated May 5, 2019, as 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. View all newsletters