By Charles Haynes, J.D.
In 2006, frustrated by the lack of research and treatment options for patients with ependymoma, Mark Gilbert, M.D., deputy chair of the Department of Neuro-Oncology at MD Anderson, proposed creating an international group to develop new treatments for this rare type of brain tumor.
Under Gilbert's guidance, the Collaborative Ependymoma Research Network (CERN) Foundation was established with the mission of developing new treatments for ependymoma, improving the outcomes and care of patients and, ultimately, finding a cure.
Today, the CERN Foundation is a dynamic, multi-institutional collaborative effort comprised of investigators from over 20 international cancer centers with leadership from MD Anderson (for adults) and St. Jude Children's Research Hospital (for pediatrics).
The CERN initiative is built around the following interrelated projects: pathology, developmental therapeutics, stem cells and laboratory models, patient outcomes assessment, public awareness and outreach. These complimentary projects are all focused on supporting CERN's clinical trial efforts, which are currently accruing patients to three Phase II trials and one Phase I trial.
On April 19, 2012, the CERN Foundation was joined by patients, caregivers, advocates and health care professionals from around the world in celebrating the first Ependymoma Awareness Day. Ten governmental entities, including the City of Houston and the state of Texas, officially recognized April 19 as Ependymoma Awareness Day.
Hope takes flight
The special day was commemorated with a mass butterfly release on the grounds of the Houstonian Hotel. Over 700 live butterflies were released to honor those affected by ependymoma and to support ependymoma research.
In a touching statement delivered to those gathered on the lawn of the Houstonian, Wenger shared his thoughts on the importance of Ependymoma Awareness Day to the group. "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."
"We are here to see the butterflies that were sponsored in her name. For us these butterflies are a reflection of all the love that helped to sustain us through the pain of losing Kayla. They give us hope." he says.
"Please know that we are grateful to be here with you today representing so many other families who are fighting this disease now, who fought it before and who may someday be forced to join the fight. Your work through the CERN Foundation gives us all hope. We, in turn, hope that these butterflies inspire you to find the answers we all are seeking."
For more information on the CERN Foundation, visit www.cern-foundation.org.