2012 Ependymoma Awareness Day Outreach
— Categories: Press Release Posted on May 15, 2012
In a groundswell of international support, patients, caregivers, professionals and advocates participated in a variety of events marking April 18, 2013, as Ependymoma Awareness Day.
Ependymoma Awareness Day in England
Chris, along with his family and friends, held Ependymoma Awareness Day in The Victoria Shopping Centre, Harrogate, North Yorkshire England, on April 19, 2012. The young man you see is Chris who has been battling ependymoma since he was 8. He started with a brain tumor in the 4th ventricle, which then spread to the spine when he was 12. From the time he was diagnosed, Chris has battled 30 tumors, had numerous operations including 7 at the top of the spine. He has received 60 rounds of radiotherapy, two sessions of cyberknife, two sessions of gammaknife to 10 lesions in the brain plus 4 months of high dose chemotherapy. Chris will be 21 this year. It goes without saying that Chris is a brave young man who has dealt with a lot with quiet courage and dignity.
He raises funds for any treatments that could help Chris fight his tumor with any surplus going to ependymoma research. Chris was thrilled that CERN had established an Ependymoma Day and punched the air with glee when the butterflies were released! He gave out butterfly stickers to those who approached him and informed them as best we could about ependymoma. Chris celebrated Ependymoma Awareness Day with his mother, Chris’s grandma and friend Edna who kindly helped us. Chris, as well as all his family, would like to thank all at CERN for striving so hard to cure this despicable disease.
Best wishes, Sara Wilson (Chris’ mother)
Sadly, Chris lost his battle with ependymoma in January of 2013.
Others Create Awareness
Many families, patients, bloggers and advocacy organizations spread the word about Ependymoma Awareness Day and their experiences on Twitter, Facebook or their personal blogs.
Here are some of the blog posts:
- Alexa’s Gifts of Hope Foundation
- North Bellmore Teen Honored on Ependymoma Awareness Day by Bellmore Patch
- Shedding Light on the Ependymoma Fight by Cancerwise
- First Annual Ependymoma Awareness Day by A Jar of Fireflies
- What is Ependymoma and why should I care? by John’s Tumor
- Ependymoma Awareness Day—April 19, 2012 by Can’t Duck It
- Everyone’s Responsibility by Hawktober
- The First of Many: Five Years Ago by Yoke