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Ependymoma Awareness Day

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

Ependymoma Awareness Day
Join the CERN Foundation and the National Brain Tumor Society during Brain Tumor Awareness Month to commemorate the 2021 Ependymoma Awareness Day!  This year Ependymoma Awareness Day will be held on May 10 to represent the 10 different molecular groups of ependymoma. Held every year since 2012 as global advocacy event, Ependymoma Awareness Day highlights the importance of an accurate diagnosis and the urgent need for better targeted treatments.

Ependymoma Awareness Day (EAD) was established in 2012 by the CERN Foundation as part of a global effort to shine a light on this poorly understood disease. Our goal with Ependymoma Awareness Day is to increase public recognition of this rare tumor and the urgent need for more clinical studies to improve diagnostic methods, develop better targeted treatments and improve outcomes for those living with this disease.  View the 2020 Ependymoma Awareness Day for more ideas.

Ependymoma is a heterogenous disease, meaning there is great diversity within the disease. We know about these differences because of the extensive work that has been done in molecular classification by an international group of collaborative scientists. Molecular analysis allows us to look inside a cell to identify important DNA or RNA changes and markers. The classification of molecular groups and subtypes for ependymoma is constantly evolving. Today, 10 different major types (molecular groups) of ependymoma are recognized and are distinguished according to location, pathology, and distinct molecular features. Understanding these important molecular differences will help guide future clinical protocols designed to identify targeted therapies. To learn more about molecular diagnostics watch the c-IMPACT NOW Educational Event.

CERN has been a significant contributor of the scientific research efforts that lead to the discovery of the ependymoma groups.

Butterfly Release
On Ependymoma Awareness Day, butterflies around the world are released to honor loved ones with ependymoma, recognize care partners and medical workers, and to support ependymoma research efforts.  The delicate and beautiful butterfly was chosen to represent the spirit of the ependymoma community as a symbol of hope through change. Read more for ways to get involved on May 10 for Ependymoma Awareness Day!  “The butterfly was chosen as a symbol to represent hope. Just as a butterfly dramatically changes its shape, so does the meaning of hope along this journey. Hope is something that I am guessing everyone here has been forced to cling to in our greatest moments of despair. Ependymoma survivor Maise said it best: HOPE is Holding On for Possibilities that are Extraordinary.” Kimberly Wallgren, Executive Director of the CERN Foundation, a program of the National Brain Tumor Society.    

The CERN Foundation will commemorate Ependymoma Awareness Day with a live streamed virtual event that will take place on May 10, 2021 at 1PM EST on the CERN 2021 EAD website and Facebook Live. The 30-minute program will feature educational and awareness content from CERN Advisors and Members, historical clips from previous EAD events, key issues from the ependymoma community, and will conclude with a butterfly release.

RSVP for the virtual EAD event by emailing today.