Mission: Committed to improving the care and outcome of people with ependymoma through community support and research efforts

Image of Sharon and Finn looking at one of Finn's photos together. Finn is an ependymoma survivor.

As I reflect back on this year, it is with great humbleness that I send this email. I hope you all got a chance to view the Ependymoma Awareness Day video. While hope is the core theme each year, a second underlying theme uniquely emerges every time. This year the theme that kept appearing through our planning was the power of sharing your story. While COVID presented many challenges, it did not stop us from sharing our stories. We turned to new ways and familiar ones to do that. Some of us share our stories publicly on blogs and social media, and some of us prefer to share with family and close friends in private settings.

You see, either way, there is great power when we share our stories, as you have certainly experienced in your own life. Our stories motivated us to be here today, and our stories inspire small acts of kindness that can go on to make great change. They encourage others to keep going. They bring comfort to those facing challenges.They ignite a flame under researchers and clinicians. They connect us. Everyone in this community has a story. What is truly beautiful is that when we connect with other people, their stories become a part of ours. Our experience with others shapes us, and we no longer operate alone but move forward connected. When we share our stories, we invite people to be a part of something larger than themselves — a remarkable occurrence in this day and age.

And maybe the most important part of it all is our stories never truly end. It’s even true for those loved ones who are no longer physically with us. Their stories never actually end when we keep sharing their stories. The memories and love continue on in new ways because story sharing is essentially story living. It isn’t a linear process. It is constantly evolving and growing in ways we sometimes can’t even imagine.

Our hope today is that our stories will impact the lives of people living with a brain or spinal cord tumor and bring forward new treatments so others don't have to experience what we have gone through. We know it is possible to get there, or none of us would keep trying. Is it difficult? Yes, very. But it’s possible. What we are doing together truly matters in the lives of people diagnosed with brain and spinal tumors today and for those people who will be diagnosed in the future.

On behalf of ependymoma families around the world, thank you for your ongoing support and dedication.

Sincerely,

Kimberly M. Wallgren
Executive Director of the CERN Foundation, a program of the National Brain Tumor Society

Image of a butterfly, cut out and created by a survivor.

2022 CERN Foundation Year-End Report

The CERN Foundation, a designated program of the National Brain Tumor Society, celebrates 16 years of serving the international ependymoma community through community support and research efforts. Because of your generous support, we were able to accomplish the projects and programs listed below. A sincere thank you to all of the advisors, board members, NBTS staff, volunteers, survivors, and care partners who make these efforts possible.

Recognized the 2022 Ependymoma Awareness Day on May 10 that included personal stories about ependymoma survivorship from Dawn, Monica, Minor, and Sharon, as well as footage from the CERN Butterfly Release in Bethesda, MD. Thousands of people from all over the world viewed and shared the virtual program to raise awareness about ependymoma. Watch the official EAD video and read the 2022 Ependymoma Awareness Day Outreach Report. Thank you to our international community of collaborators for spreading awareness about this rare disease!
Learned a CERN seed grant launched a new $3M Ependymoma Research Project. Discoveries from the 2020 CERN Robert Connor Dawes Pediatric Fellowship, supported by the National Brain Tumor Society, to Dr. Chan Chung in Dr. Sriram Venneti’s laboratory at the University of Michigan, were instrumental in helping to win an esteemed $3 million R01 grant from the National Cancer Institute (NCI).
Named Kendra Maass, from the Hopp Children's Tumor Center Heidelberg (KiTZ) and German Cancer Research Center (DFKZ), as the recipient of the 2022 CERN and Robert Connor Dawes Scientific Fellowship awarded by the National Brain Tumor Society. Research efforts will focus on unraveling the mechanistic dependencies of ependymoma tumor cells on extracellular vesicle pathways.
Released two new Ependymoma Essentials — an educational video series for ependymoma patients and care partners. This community-driven initiative is designed to create educational videos that communicate reliable and trustworthy information in collaboration with leaders in the ependymoma community.
Provided high-quality education and awareness programs to hundreds of ependymoma community members through patient referral support, the Ependymoma Guide, and the CERN Foundation website.
Distributed monthly e-newsletters featuring seven new inspiration stories, spotlight articles, news updates, and ependymoma community blog posts, including Managing a Rare Disease During the COVID-19 Pandemic, Intimacy and a Brain or Spinal Cord Tumor Diagnosis, and Tips from the Ependymoma Community for Children and Adults Starting Radiation Treatment.
Endorsed 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. The workshop addressed the advancement of survivorship care for people living with primary central nervous system cancers. Read the manuscript in Neuro-Oncology Advances.
Said Goodbye to the Patient Who Inspired the CERN Foundation. While it was never his intention or desire, Dallas Mathile’s diagnosis with an anaplastic ependymoma in 2002 sparked 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.
Supported the 2022 Society for Neuro-Oncology (SNO) Meeting in Tampa, FL. Of key interest to our community is the need for new innovative clinical trials that include eligibility for ependymoma patients and further understanding of molecular diagnostics incorporating these findings into targets for new trial development.
Made significant progress over the past year through three interconnected, programmatic strategies: Defeat, Connect, and Change. Read more in the National Brain Tumor Society’s 2022 Impact Report.

Please visit www.cern-foundation.org for more information. Best wishes for a safe and healthy 2023!

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.

Make A Gift

The CERN Foundation and the National Brain Tumor Society have joined forces to help people with ependymoma and advance ependymoma research toward the development of new and better treatments through the creation of the Ependymoma Fund for Research and Education. Today, the CERN Foundation is officially a designated program of the National Brain Tumor Society. Donations to the Ependymoma Fund for Research and Education will be made on the NBTS website and used to support research efforts that will benefit both ependymoma patients and research through CERN. Emphasis will be placed on CERN’s historical model of supporting work that translates basic science into clinical practice. The Fund will also address overcoming barriers to clinical trial accrual and the development of new clinical studies for ependymoma patients. Additional funds will be used to support educational efforts through print, media, and awareness events. The new collaborative Ependymoma Fund will continue CERN’s practice and tradition of involving and collaborating with other scientists, medical providers, foundations and supporters of ependymoma research.

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