2013 Ependymoma Awareness Day
The CERN Foundation and St. Jude Children’s Research Hospital host event to bring attention to a rare brain tumor that strikes both children and adults.
Hundreds of brightly colored butterflies covered the skies over St. Jude Children’s Research Hospital as they were released by patients, scientists and doctors to mark the second annual Ependymoma Awareness Day on April 18, 2013. Ependymoma is a rare cancer of the brain or spinal cord that strikes children and adults. The event is organized by the Collaborative Ependymoma Research Network (CERN) Foundation.
The butterfly release coincided with the semi-annual CERN investigator meeting at St. Jude. The butterfly release symbolizes the buoyed hope of improved treatments for this devastating cancer through collaboration.
“Through this team science approach, talented researchers are uniting in one cause that studies ependymoma from the laboratory to the clinic and across the life span,” said Richard Gilbertson, M.D., Ph.D., Comprehensive Cancer Center director at St. Jude and co-principal investigator of CERN. “Our collaboration with CERN is a natural extension of St. Jude’s cornerstone philosophy to freely share research and discoveries as a means to advance cures worldwide.”
CERN began in 2006 to jumpstart ependymoma research globally. Since then, more than 20 institutions have joined the endeavor. More than 80 patients have been enrolled in CERN clinical trials and discoveries in the laboratory are fueling progress.
Ependymomas account for 3 to 6 percent of all tumors of the central nervous system. The overall five-year survival rate is greater than 80 percent. However, new and innovative treatments are needed to reduce side effects from the cancer and its treatment as well as to help those patients who relapse.
“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,” said Mark Gilbert, M.D., the medical director and principal investigator of CERN.
Kimberly Delivers Speech At Butterfly Release
The 9-year-old fought a valiant fight against the disease enduring seven surgeries, two rounds of radiation and four different kinds of chemotherapy and sadly lost his battle on May 26, 2012.
Kimberly says “I stand here before you respectfully honored to offer hope to our families that our impacted by ependymoma. Hope that Ryan’s 32 million tumor tissues that we donated will someday bring a cure to their children so they will never have to go through the loss that we suffered.”
Ian Speaks At Ependymoma Awareness Day
Ian’s son, Colin, was diagnosed with anaplastic ependymoma at age two.
Ian says “The child who was once trapped within his own skin is truly living in it and we owe a tremendous debt to the many researchers, clinicians, and medical teams that have made today possible and give hope to other families who find themselves in our shoes.”
Ependymoma Awareness Outreach
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: District of Columbia, State of Colorado, State of Illinois, State of Indiana, State of Missouri, State of New Hampshire, State of New York, State of North Carolina, State of Ohio, State of Oregon, State of Pennsylvania, State of Tennessee, State of Texas, State of Virginia, Montgomery County (MD), Shelby County (TN), Toronto (Canada), City of Austin, City of Chicago, City of Dayton, City of Eureka, City of Happy Valley, City of Houston, City of Ithaca, City of Los Angeles, City of Memphis, City of Palo Alto, City of Pittsburgh, City of San Diego and City of Sunnyvale.
Kayla’s Family and Friends Honor Her Memory
As Kayla’s 13th birthday approached on January 28, 2013, aunts Debbie and Julie, struggled with how to both celebrate her life and honor her memory. They decided to collect donations for a park bench dedicated in Kayla’s name for Ependymoma Awareness Day.
Julie said “The day was filled with love, lots of pink, a good dose of indulgence and what I consider a true reflection of all things Kayla. It was also a reminder of the incredible impact she had on so many people and the continued influence she has in shaping our lives every day.”
Ependymoma Awareness Worldwide
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.
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.