Ependymoma Awareness Day 2019

Ependymoma Awareness Day 2019

Patients, caregivers and medical professionals from around the world dedicated May 5, 2019, as the eighth annual Ependymoma Awareness Day!

The CERN Foundation held a butterfly release as part of Ependymoma Awareness Day on Sunday, May 5, 2019 in Washington, D.C. 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.

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.

Ian Delivers Speech at Ependymoma Awareness Day

Ian Shares His Story

At age 11, Ian is sharing hope to the world and to those battling ependymoma that need an inspiration.

Ian says, I don’t remember the day they discovered my brain tumor, but my mom says it’s a day she will never forget. It was Mother’s Day and I was only 15 months old. My surgery began. I died for a moment, but as you can see... I fought back. I had a bigger plan of my own.”

Neuro-oncologist and Ependymoma Survivor Shares Her Story

Zsila Gives Back

After Zsila was diagnosed with grade II ependymoma in 1994, she decided to give back and become a pediatric neuro-oncologist.

Zsila says, “We are all here together because we’ve been through this journey together. I may be a pediatric neuro-oncologist, but I have something in common with you. I was in your shoes. I had a brain tumor myself - an ependymoma.”

Kimberly Encourages the Brain Tumor Community

Kim Motivates Attendees

Kim, President of the CERN Foundation, shares the importance of community.

Kim says, “We are all doing our best and trying to play our part in this group. So maybe tonight you have some extra hope to share or maybe you are in need of a little bit more. You are in the right place. Find confidence in the role you have and know that no act or contribution is too small.”

Ependymoma Awareness Outreach

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

Ependymoma Community Gets Involved

In a groundswell of international support, patients, caregivers, professionals and advocates participated in a variety of events marking May 5, 2019, 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 Awareness Day activities so that we can feature them on our website, giving inspiration and direction to others as they get involved in Ependymoma Awareness Day! 

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