CERN Foundation

CERN Members are a collaborative network of researchers and medical providers who are constantly making new discoveries.

We are committed to being a resource to the ependymoma community regarding the latest in ependymoma research, diagnosis, treatment, and the impact on patients and their caregivers.

Samreen Shaikh receives the 2024 CERN and Robert Connor Dawes Scientific Fellowship Award with the National Brain Tumor Society

— Categories: Categories: Categories: Categories: CERN Research Articles Ependymoma Research Articles Press Release Ependymoma Community Posted on September 18, 2024

This fellowship award is a part of an ongoing collaboration between the CERN Foundation, National Brain Tumor Society, and the Robert Connor Dawes Foundation, and was created with the goal of advancing pediatric ependymoma scientific research through collaborative partnerships, internationally.

Ependymoma Guide - Third Edition Released

— Categories: Categories: Press Release Ependymoma Community Posted on June 14, 2024

The CERN Foundation, a program of the National Brain Tumor Society, recently released the third edition of the Ependymoma Guide. The goal of this guide is to provide basic facts about ependymoma to increase education and awareness about the rare disease.

2024 Ependymoma Awareness Day Outreach Report

— Categories: Categories: Press Release Ependymoma Community Posted on May 31, 2024

In a groundswell of international support, patients, care partners, medical professionals, and advocates participated in a variety of events marking May 5, 2024, as Ependymoma Awareness Day.

Hope Themed Creative Writing Project Raises Awareness for Ependymoma

— Categories: Categories: Press Release Ependymoma Community Posted on April 30, 2024

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 importance of hope. 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.

New Grant Aims to Jumpstart Treatment Development for Patients with Rare Pediatric Ependymal Tumors

— Categories: Categories: Categories: Categories: CERN Research Articles Ependymoma Research Articles Press Release Ependymoma Community Posted on February 7, 2024

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.

Taking Your Life Back After Ependymoma

— Categories: Ependymoma Community Posted on December 7, 2023

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.

Power of Presence

— Categories: Ependymoma Community Posted on November 30, 2023

Ependymoma Community Blogger Adam Holland shares his perspective on the power of presence and the impact it had on him during his treatment and survivorship of ependymoma. Throughout his entire journey, various medical professionals and allied healthcare workers, strangers in the waiting room, friends, family, and more have come alongside him in a meaningful way. Adam shares "The reality of the entire cancer process is that we cannot do it alone, we need others more than ever in our lives." Read more about the powerful ways connection has shaped his experience and changed his perspective.

Ependymoma Key Issues

— Categories: Categories: Press Release Ependymoma Community Posted on June 13, 2023

The Ependymoma Key Issue effort serves as a critical example for other groups that are looking for a launching point to address how their unique challenges and opportunities fit within the larger narrative needs of the global brain tumor community.

Ependymoma Essentials - Educational Video Series for Ependymoma Patients and Care Partners

— Categories: Categories: Press Release Ependymoma Community Posted on December 20, 2022

A community driven initiative designed to create educational videos that communicate reliable and trustworthy information in collaboration with leaders in the ependymoma community.

Tips From the Ependymoma Community for Children and Adults Starting Radiation Treatment

— Categories: Ependymoma Community Posted on October 21, 2022

We asked the ependymoma community to share useful tips for people starting radiation treatment and received good feedback from survivors, parents, and care partners.

NCI-CONNECT leads Survivorship Care in Neuro-Oncology Workshop in partnership with advocacy organizations including the CERN Foundation and National Brain Tumor Society

— Categories: Categories: Categories: Ependymoma Research Articles Press Release Ependymoma Community Posted on August 17, 2022

The CERN Foundation a program of the National Brain Tumor Society, proudly endorses the Proceedings of the Survivorship Care in Neuro-Oncology Workshop Sponsored by the Comprehensive Oncology Networking Evaluating Rare CNS Tumors (NCI-CONNECT), which summarizes a two-day virtual workshop held virtually on June 20 and 21, 2021, addressing the advancement of survivorship care for people living with primary central nervous system cancers.

Intimacy and a Brain or Spinal Cord Tumor Diagnosis

— Categories: Ependymoma Community Posted on July 21, 2022

A rare disease diagnosis is isolating and impacts so many areas of life including the taboo subject of self-image and sexuality. After all, there may be no other factor as important in the ‘quality of life’ discussion as intimacy.

2022 Ependymoma Awareness Day Outreach Report

— Categories: Categories: Press Release Ependymoma Community Posted on May 27, 2022

In a groundswell of international support, patients, care partners, medical professionals and advocates participated in a variety of events marking May 10, 2022 as Ependymoma Awareness Day.

Saying Goodbye to the Patient Who Inspired the CERN Foundation

— Categories: Ependymoma Community Posted on February 18, 2022

While it was never his intention or desire, Dallas Mathile’s diagnosis with an anaplastic ependymoma in 2002 would spark the creation of a unique research and advocacy organization that today serves as a collective voice, a safe and caring place, and an innovator, all for the ependymoma community.

Managing a Rare Disease During the Covid-19 Pandemic

— Categories: Ependymoma Community Posted on January 12, 2022

Hearing the phrase, “you have cancer” is terrifying. Learning that you have a rare type of cancer makes it even more daunting. Doing those things while a global pandemic is occurring complicates it all, which only adds to the pressure of the moment.

Ependymoma Key Issues Article featured in the 2021/2022 edition of Brain Tumour Magazine, published by the IBTA

— Categories: Ependymoma Community Posted on September 24, 2021

A collaborative exercise to raise awareness of the unique issues facing a rare brain and spinal cord tumor community.

What advice do you have for other ependymoma parents?

— Categories: Ependymoma Community Posted on September 15, 2021

We asked our community to share their advice for other ependymoma parents with a newly diagnosed child. We received numerous responses. Thank you for your participation! Read their advice for pediatric ependymoma families.

Childhood Cancer Awareness Month: It’s Complicated

— Categories: Ependymoma Community Posted on September 9, 2021

Ependymoma caregiver, Tamiko, shares insight into the different reactions from the pediatric cancer community during Childhood Cancer Awareness Month and offers words of wisdom to the brain tumor community.

Awareness Starts With You

— Categories: Ependymoma Community Posted on May 21, 2021

Ependymoma survivor, Jennifer, shares the importance of awareness and how internal awareness is step one. Jennifer writes “Awareness began for me when I began to worry about what felt like a little fire inside my left temple.” Read her second Ependymoma Community Blog entry titled 'Awareness Starts with You' to learn more about her personal experience with awareness.

Survivorship: What’s Next?

— Categories: Ependymoma Community Posted on January 13, 2021

Adam Holland writes about his experience moving forward after his diagnosis with ependymoma. He reflects on all that he has gone through and provides insight into the process of accepting his new normal. In this blog article, Adam reminds us all of the power of telling our story.

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