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.
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.
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.
Dontrell's mother, Charmaine, shares their story with an ependymoma diagnosis.
Share Your Story
Help others who are going through similar experiences by sharing your ependymoma journey.
Patients, care partners and medical professionals from around the world dedicate May 10, 2021 as the tenth annual Ependymoma Awareness Day!
On May 3, 2020, CERN held the ninth annual Ependymoma Awareness Day with a virtual butterfly release.
Patients, caregivers and medical professionals from around the world dedicated May 5, 2019, as the eighth annual Ependymoma Awareness Day!
To commemorate the seventh Ependymoma Awareness Day, butterflies were released in Washington, DC by the ependymoma and brain tumor community on May 6, 2018.
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.
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.
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.
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.
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.