“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 Karp honors the memory of her son, Ryan Kennedy. Ryan was diagnosed with ependymoma in 2007. The 9-year-old fought a valiant fight against the disease enduring seven surgeries, two rounds of radiation and four different kinds of chemotherapy. Sadly, Ryan Kennedy lost his battle on May 26, 2012.
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.
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.
Many families, patients, bloggers and advocacy organizations spread the word about Ependymoma Awareness Day and their experiences on our Twitter and Facebook pages.
2012 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.