Ependymoma Awareness Day 2016

Ependymoma Awareness Day 2016

Patients, caregivers and medical professionals from around the world dedicated May 2, 2016, as the fifth annual Ependymoma Awareness Day!

The CERN Foundation held a butterfly release as part of Ependymoma Awareness Day on Monday, May 2, 2016 in Washington, DC. Over 700 butterflies were released to honor loved ones with ependymoma, caregivers and to support ependymoma research. The delicate and beautiful butterfly was chosen to represent the spirit of the ependymoma community as a symbol of hope through change. The butterfly release was photographed and videotaped so that supporters around the world can participate and share in this moving event!

Our hope with Ependymoma Awareness Day 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.

Our team is dedicated to improving the lives of children and adults worldwide diagnosed with ependymoma.

The CERN Foundation would like to thank all of you that have participated in this moving and unique event. CERN is especially grateful to the National Brain Tumor Society for allowing us to hold the butterfly release during their Head to the Hill event. Your efforts and donations will help us immensely in creating awareness about this rare disease, and help expand our efforts to improve the care and outcome of people with ependymoma.

To purchase a lapel pin, temporary tattoo, hat or donate, click here.

Steve Cox Delivers Speech at Ependymoma Awareness Day

Steve Shares How a Brain Tumor Diagnosis Impacted His Life

Neurologists called Steve with the news that they found an ependymoma attached to his brain stem. Several months into his recovery, his wife began having some health problems and doctors found a glioblastoma brain tumor. This inspired him to write a book which was available at the butterfly release.

Steve says, “We were completely taken by surprise when an MRI found a six centimeter tumor in her head. A few days later, Barbara had surgery. The same doctor who operated on me operated on her. The same nurses who tended to me tended to her. Our roles reversed. I became the caregiver and now she was the patient.”

Ependymoma Awareness Outreach

On a local level, many chose to participate in activities to create awareness about ependymoma where they live.


Numerous city and state governments have shown their support by issuing proclamations naming May 2, 2016 as Ependymoma Awareness Day; including: Alabama, Harford County Maryland, Houston, Indiana, Maryland, Massachusetts, Milwaukee, and Texas.

Ependymoma Awareness Worldwide

Ependymoma Community Gets Involved

In a groundswell of international support, patients, caregivers, professionals and advocates participated in a variety of events marking May 2, 2016, as Ependymoma Awareness Day.

Many families, patients, bloggers and advocacy organizations spread the word about Ependymoma Awareness Day and their experiences through news services, on Twitter and Facebook pages. Share your story or blog with us!

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