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
Children’s Book Released to Help Families Faced with an Illness
Samarrah, a social worker and writer, launched a children’s picture book that helps families with a child who has been diagnosed with a brain tumor or other critical illness.
Success is Measured by the Impact We Make
Since being diagnosed with an anaplastic ependymoma, Eric has dedicated his time and energy to giving back to kids and teens to put an end to child abuse, bullying, as well as life-threatening childhood illnesses.
Beacon of Hope
Jeff experienced side effects from an ependymoma in his spine and wants others to know how important it is to self-advocate to receive the best care.
Providing Support to Ependymoma Parents
Tamiko helps other parents navigate through their journey as the moderator for an online ependymoma parents support group.
Share Your Story
Help others who are going through similar experiences by sharing your ependymoma journey.
Events
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.