CERN Foundation

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: cern-foundation.org/uploads/Ependy…

We’re proud to announce a new @NBTStweets-funded research project through @CERNfoundation to advance understanding of spinal #ependymoma — a rare and understudied CNS tumor affecting children & adults.

Led by Dr. Eric Holland of @fredhutch, this international effort will create a molecular “reference landscape” to improve diagnosis and inform future treatments. Learn more: braintumor.org/news/national-…

Registration is now open for Head to the Hill! Join NBTS on Capitol Hill in D.C. from May 3-5, 2026, to share your story & advocate for the #braintumor community. Register for Head to the Hill today: BrainTumor.org/HeadtotheHill #Head2Hill

To our ependymoma community, best wishes for a warm and bright 2026. We are thankful for you!

Read the CERN Foundation Year-End Letter & Report from the National Brain Tumor Society @NBTStweets: braintumorcommunity.org/site/MessageVi… A sincere thank you for your support!

Dr. Filbin shares her expertise on the importance of thorough tumor testing for ependymoma, which can provide insights into diagnosis, prognosis, and potentially impact treatment decisions: youtu.be/W39dN6fmrek #epENDymoma

Daniel Godsil shares the story of his young daughter, Betsy, and her journey with ependymoma: youtu.be/19Y0Xf_BYKE He highlights the lack of information around treatment for ependymoma, which can lead to uncertainty for families making decisions about treatment. #epENDymoma

Dr. Hadjipanayis discusses the important aspects of navigating a brain or spine tumor diagnosis, particularly ependymoma: youtu.be/PvVwSsx5vlo He shares, "You should definitely get a second opinion. If you feel like you should get a third opinion, please do that..."

Megan and Mike Patterson share their personal journey and the importance of seeking second opinions after Megan's diagnosis with grade 3 ependymoma with MYCN amplification: youtu.be/2af8mMPosYk #epENDymoma

Support the Ependymoma Fund at the National Brain Tumor Society @NBTStweets. Give Today! secure.braintumor.org/site/Donation2…

Leta, a spinal tumor survivor, gives detailed insight into the long road of symptoms leading up to a shocking diagnosis. A core part of her healing journey was the power of storytelling: cern-foundation.org/awareness/stor…

Prioritize Your Support to the Ependymoma Fund at the National Brain Tumor Society this Giving Season: secure.braintumor.org/site/Donation2…

Thank you, brain tumor community, for your advocacy. Nearly 4,500 of you signed our petition urging the NCI to continue dedicated support for pediatric brain tumor clinical trials through the PBTC.

Your advocacy helps ensure that the urgent, unmet needs of the brain tumor community continue to be heard and addressed.

Want to do more? Complete our action alert asking Congress to pass a budget that ensures reliable funding for research in 2026: braintumor.quorum.us/campaign/14192…

Caring for a loved one with a brain tumor takes strength, patience, & organization. We’ve rounded up 5 apps and tools designed to make caregiving easier — learn more on our blog: braintumor.org/news/5-essenti…

Heading to #SNO2025? Visit our NBTS booth to learn more about #MyTumorID, our public health campaign advancing awareness of and access to biomarker testing and clinical trials for patients with a #braintumor.

NBTS’s Kim Wallgren was honored to share our #MyTumorID campaign with an international audience at IBTA this week, promoting more access to information about biomarker testing and clinical trials for patients with #braintumors.

Thank you to Kathy Oliver and the entire team at IBTA for their invitation to present. You can learn more about #MyTumorID — including making informed decisions about your care — at MyTumorID.org

Ependymoma Community Blogger Adam Holland shares his perspective on the realities of survivorship and the ups and downs he has experienced along the way: cern-foundation.org/news/the-shado… Read his survivorship experience & how it has changed his view on the next chapter in his journey.