Ependymoma Awareness Day 2012
The CERN Foundation commemorated Ependymoma Awareness Day with a mass butterfly release that took place at the semi-annual CERN investigator meeting on April 19, 2012.
The release was held at the beautiful Houstonian Hotel in the Meadow at 2 p.m. on Thursday. Over 700 butterflies were released to honor loved ones with ependymoma and support ependymoma research.
The CERN Foundation would like to thank all of you that have participated in this moving and unique event. Your efforts and donations will help us immensely in creating awareness about this rare disease, and ultimately help in our research efforts to find a cure for Ependymoma.
The proceedings of the event were captured on video and are available for you to share in the experience.
On a local level, many chose to participate in activities to create awareness about ependymoma where they live. The day was officially proclaimed Ependymoma Awareness Day by elected officials around the US, including:
The District of Columbia, The Village of Schaumburg (IL), The City of Austin, The City of Detroit, The City of Houston, The State of North Carolina, The State of Texas, The State of Wisconsin, UNC Neuro-Oncology Program
Alexa’s Gifts of Hope
Foundation Formed to Honor the Life of Alexa
Alexa’s Gifts of Hope Foundation raises money for pediatric brain tumor research and helps support children who are afflicted with ependymoma.
Alexa’s mother, Rosa, writes about Alexa’s journey.“She taught everyone around her how to be brave during tough times and to always have hope. She taught everyone around her how to be grateful for the things that we have and to be understanding of others who fight their own battles. She didn’t live a day without showing her love and appreciation for everyone. Her life on earth was short but the lessons she taught everyone will live on.”
Eric Honors His Daughter
Eric Delivers Speech at Butterfly Release
In a touching statement delivered to those gathered on the lawn of the Houstonian, Eric shared his thoughts on the importance of Ependymoma Awareness Day to the group.
Eric says, “Kayla had an effect on people all through her more than five-year battle. Now, more than a month after she slipped from our grasp, we find that she still has those same powers. She continues to touch, affect and inspire people.”
Ependymoma Awareness Outreach
Ependymoma Awareness Day Worldwide
Chris, along with his family and friends, held Ependymoma Awareness Day in North Yorkshire England on April 19th. The young man you see is Chris who has been battling ependymoma since he was 8.
Chris’ mom says, “It goes without saying that Chris is a brave young man who has dealt with a lot with quiet courage and dignity.”
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.