Ependymoma Awareness Day 2015
Patients, caregivers and medical professionals from around the world dedicated May 5, 2015, as the fourth annual Ependymoma Awareness Day!
A butterfly release was held at St. Jude Children’s Research Hospital in Memphis, Tennessee, on Tuesday, May 5, 2015. Hundreds of brightly colored butterflies covered the skies and were released to honor loved ones with ependymoma, caregivers and to support ependymoma research. The delicate and beautiful butterfly was chosen to represent the spirit of the ependymoma community as a symbol of hope through change. The butterfly release was videotaped and posted to the internet so that supporters around the world can participate and share in this moving event!
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.
The CERN leadership team shared some exciting new opportunities to expand our efforts, which include:
- Establishing a CERN Research Fellowship
- Broadening our reach and expanding our collaborations
- A new research initiative, “PRIME” focused on myxopapillary ependymoma.
Our team is dedicated to improving the lives of children and adults worldwide diagnosed with ependymoma.
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.
To donate, click here.
Kimberly Shares How The CERN Foundation Is Expanding
Kim’s father was diagnosed with anaplastic ependymoma thirteen years ago and she works as the Patient Liaison for the CERN Foundation. Kim communicates directly with the ependymoma community, helping patients and caregivers.
Kim says, “We are desperate for action; action that helps translate into meaningful changes for the future of people diagnosed with ependymoma. Futures that are brighter and longer than the outlook some are currently faced with.”
Dismuke Family Delivers Speech at Ependymoma Awareness Day
Ingram, who was diagnosed with anaplastic ependymoma when he was three, is now a happy six-year-old boy who likes to pester his big sisters all the time!
Ashley says, “My husband and I drove to the hospital with Ingram, speeding, and we had no idea what to expect. Our world had been shattered by that one phone call and we didn’t know if Ingram was going to live or die at that moment.”
Ependymoma Awareness Outreach
On a local level, many chose to participate in activities to create awareness about ependymoma where they live.
Numerous city and state governments have shown their support by issuing proclamations naming May 5, 2015 as Ependymoma Awareness Day; including: Chapel Hill, Harford County (MD), Houston, Illinois, Indiana, Memphis, North Carolina, Pennsylvania, Texarkana, Texas and Washington D. C.
Ependymoma Awareness Worldwide
In a groundswell of international support, patients, caregivers, professionals and advocates participated in a variety of events marking May 5, 2015, as Ependymoma Awareness Day.
Many families, patients, bloggers and advocacy organizations spread the word about Ependymoma Awareness Day and their experiences through news services, on Twitter and Facebook pages. Share your story or blog with us!