Ependymoma Awareness Day 2017

Ependymoma Awareness Day 2017

Patients, caregivers and medical professionals from around the world dedicated May 8, 2017, as the sixth annual Ependymoma Awareness Day!

The CERN Foundation held a butterfly release as part of Ependymoma Awareness Day on Monday, May 8, 2017 in Washington, DC. Hundreds of 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. This year is the CERN Foundation’s 10-year anniversary. To commemorate this accomplishment, we highlighted 10 people affected by ependymoma who each opened their own box of butterflies!

The butterfly release was photographed and videotaped so that supporters around the world can participate and share in this moving event. View the butterfly release photo gallery

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.

Burke Delivers Speech at Ependymoma Awareness Day

Burke Shares His Journey With Ependymoma

When Burke was in eighth grade, he began to get sick but he was unsure why. An MRI revealed an ependymoma brain tumor.

Burke says, “I started getting headaches, but that wasn’t a big a deal. I went to the doctor a few times, but they thought it was just vertigo, acid reflux or pediatric migraines. They couldn’t figure it out. Finally, after about a year, they scanned my head. Brain tumor. Ependymoma. Wow. It felt like the end of the world. I named my tumor Frank.”

Ependymoma Awareness Outreach

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

Proclamations

City and state governments have shown their support by issuing proclamations naming May 8, 2017 as Ependymoma Awareness Day; including: Kansas and Massachusetts.

Ependymoma Community Gets Involved

In a groundswell of international support, patients, caregivers, professionals and advocates participated in a variety of events marking May 8, 2017, as Ependymoma Awareness Day.

 

Let Us Hear From You!

Please feel free to share your experiences with us and submit information and pictures of your activities so that we may include them in future events and on our website, giving inspiration and direction to others as they get involved in Ependymoma Awareness Day!

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