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Staying the Course: Believe

Sean crosses a finish line with his hands out wide in accomplishment.

By Sean S.

CERN Inspiration Story

Sean shares his remarkable journey with his diagnosis, recovery, and survivorship of ependymoma. His symptoms started in 2012 when he was heading into his senior year of high school. “One thing that has always helped me is the support of others. I am so grateful to have such a large support filled with family and friends. When I find myself lacking belief, I turn to them for encouragement and drive to keep fighting.”

cIMPACT-NOW Update 7: Advancing the Molecular Classification of Ependymal Tumors

New scientific information recently published will influence the molecular classification of ependymoma tumors in the near future. This information builds upon our current understanding of ependymoma pathology and previous publications on molecular classification. Much of this data was built upon the foundational work that CERN supported. Be on the lookout for more communication on this topic as we work with founding CERN Members to dissect this information and understand the clinical relevance.

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Dr. Antony MicherlRaj, an Oncology Research Fellow from The Hospital for Sick Children in Toronto, Canada, works in his lab.

Metabolic Regulation of the Epigenome Drives Lethal Infantile Ependymoma

Ependymomas are glial tumors that occur throughout the central nervous system. Of the nine distinct molecular types of ependymoma, posterior fossa A (PFA) ependymomas, found in the hindbrain of infants and young children, are the most prevalent type. In this publication, the investigators have identified a metabolic-epigenomic link in PFA ependymomas that informs the phenotype of PFA ependymoma and possible development of novel therapeutic strategies for these lethal cancers.

Dr. Antony MicherlRaj, an Oncology Research Fellow from The Hospital for Sick Children in Toronto, Canada shares a summary of their findings with CERN.

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Support Resources

Preparing for your Telehealth Appointment

Neuro-oncology experts share what telehealth is, the benefits and limitations, how to prepare and what to expect during and after your visit. Find tips and suggestions to prepare you for a virtual appointment.

Adult and Pediatric Caregivers

There is no denying the difficulty of watching a loved one go through the emotional and physical pain of being diagnosed with an ependymoma. And the moment symptoms begin, your life as a caregiver begins and brings its own emotional and physical battles, as well. Learn how to manage your role as a caregiver.

Caring for Myself and Family

You can never be prepared for the shock of learning that you or a loved one has cancer. Battling an ependymoma is an emotional rollercoaster. Some days are good, some days are bad and some days are both. Find resources to help you cope.

Questions to Ask About Support

Your medical team can help you better understand your overall care, including what to expect and support services available. View a list of questions to ask your doctor about support.

Survivorship

The transition after the treatment of your cancer ends brings mixed emotions and new challenges to cancer survivors and their loved ones. Empower yourself by taking control of your post-treatment care. Find tools needed to plan for survivorship.

Patient Grief and Support

The speed and suddenness of a diagnosis can be utterly overwhelming for all involved. Normal routines, expectations, and hopes for the future are often put on hold. As you face difficult treatment decisions or learn to cope with frightening symptoms, you may feel as if you are just getting by on a day-to-day basis. The grieving process often begins at the time of diagnosis. Find support when dealing with grief.

Support the Ependymoma Fund for Research and Education

With your generous support, we will continue to expand our efforts to improve the care and outcome of people with ependymoma. Under “Direct My Gift to Support”, remember to select the Ependymoma Research and Education Fund.

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