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.
Inspiration Stories
From Patient to Author: Four-Time Cancer Survivor Pens Inspirational Children’s Book
Caring husband and father opens up about his myxopapillary ependymoma diagnosis at age 12 and uses his experience to help others. "I've discovered that being a good father has nothing to do with mobility or physical limitations."
Silent Thunder - A Journey of Grace with a Rare Tumour
I have learnt so much and still have so much to be grateful for. This is my journey with an ependymoma inside of my spinal cord, which led to me being a disabled person. I now have a new normal, AND I AM HAPPY AND CONTENT!
Fortitude and Acceptance
John, a professional writer, describes his personal story with an ependymoma diagnosis, treatment, and survivorship. John shares “I learned the only miracle in life is the fortitude to face and accept things, and I already have that.”
Going from Healthcare Delivery to Healthcare Recipient
After years of unexplained symptoms, Amy went from nurse and clinical researcher in the field of pediatric neuro-oncology to being on the other side as a patient diagnosed with a rare spinal tumor. Amy gives personal insight and wisdom into her experience.
Share Your Story
Help others who are going through similar experiences by sharing your ependymoma journey.
Events
Ependymoma Awareness Day 2024
Patients, care partners, and medical professionals from around the world dedicate May 5, 2024 as the 13th annual international Ependymoma Awareness Day!
Ependymoma Awareness Day 2023
The ependymoma community dedicated May 10, 2023 as the 12th annual Ependymoma Awareness Day and a butterfly release was held in Bethesda, MD to commemorate the day.
Ependymoma Awareness Day 2022
In an effort to raise awareness of ependymoma, patients, caregivers and medical professionals from around the world dedicate May 10, 2022 as the eleventh annual Ependymoma Awareness Day.
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!
Ependymoma Awareness Day 2020
On May 3, 2020, CERN held the ninth annual Ependymoma Awareness Day with a virtual butterfly release.
Ependymoma Awareness Day 2019
Patients, caregivers and medical professionals from around the world dedicated May 5, 2019, as the eighth annual Ependymoma Awareness Day!
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.
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.
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.
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.
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.
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.
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.