Ependymoma Awareness Video
Ependymoma Awareness Day (EAD) was established in 2012 by the CERN Foundation as part of a global effort to shine a light on this poorly understood disease. Our goal with Ependymoma Awareness Day is to increase public recognition of this rare tumor, highlight the importance of an accurate diagnosis, and the urgent need for better targeted treatments in order to improve the outcomes for those living with this disease.
“I watched and thought - if only THIS is what people would see when they Google 'ependymoma'!!! Such great information!” Beth
Referrals
Connecting you with neuro-oncologists who specialize in treating ependymoma.
Where to Start
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Ependymoma Basics
If you or a loved one has just been diagnosed, we are here to help you get the facts on ependymoma. Learn More
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Support
Ways you can help care for yourself or a loved one during and after ependymoma treatment. Learn More
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Diagnosis
Learn how ependymoma is diagnosed, what it looks like and what to do after being diagnosed. Learn More
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Resources
Find resources from other patients and caregivers and experts in the medical community. Learn More
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Treatment
To make the best ependymoma treatment decisions, you need to understand all of your options. Learn More
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Get Involved
Ways you can help us expand our understanding of ependymoma, raise additional funding, or create more awareness of ependymoma. Learn More
“When I was first diagnosed six years ago - my life was turned upside down. I contacted the CERN Foundation and they were so kind and genuinely interested in providing information and direction. With their help, I was able to find a medical center experienced in treating ependymoma.”
CERN Headlines
CERN Foundation Releases Ependymoma Community Blog Series
Featuring a collection of articles written by members of the ependymoma community. Some authors are ependymoma survivors and others are care partners. They share their advice to help others with ependymoma cope with their illness.
- Mar27
Hope Themed Creative Writing Project Raises Awareness for Ependymoma
In preparation for the 2024 Ependymoma Awareness Day event, the CERN Foundation issued a call for creative writing pieces on the theme of hope. Ependymoma community members from all over the world submitted original short stories and poems in order to raise awareness for the rare disease and recognize the powerful importance of hope along the way. Often, people use creative writing to express thoughts and feelings that might otherwise be difficult to share. In addition, writing can help a person process their experience and offer overall wellness benefits. Sharing these individual stories with the larger community provides support and a reminder that you aren’t alone. Submissions were used for various awareness activities and shared with the community. - Feb7
New Grant Aims to Jumpstart Treatment Development for Patients with Rare Pediatric Ependymal Tumors
National Brain Tumor Society (NBTS) is excited to announce that Johannes Gojo, MD, PhD, of Medical University of Vienna (Medizinischen Universität Wien), is the recipient of the first-ever CERN PFA Ependymoma Translational Research Award. - Dec7
Taking Your Life Back After Ependymoma
Ependymoma Community Blogger Matt Cotcher describes a view into the complexities of reclaiming life after a brain or spinal tumor diagnosis and treatment. Cotcher empowers readers to take an active role in moving forward. He shares "Acknowledge the change that comes with treatment and focus on small tasks that can be accomplished." Read more to learn about his personal experience with accepting change and taking steps to reconnect with life as he knows it.