Committed to improving the care and outcome of people with ependymoma through community support and research efforts.
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Joined March 2011
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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/…
A brain or spine tumor diagnosis impacts far more than physical health — it can create a devastating financial strain on entire families.
Family Reach helps people with cancer afford everyday needs like food and housing during treatment: familyreach.org/
After an emergency diagnosis of spinal ependymoma, Meigann went from being unable to feel her feet to walking, running & driving again.
Her story is a powerful reminder of resilience, the strength of the patient community & the courage it takes to heal: braintumor.org/news/spinal-e…
Want to get involved to help support research and education?
Consider creating your own online fundraising campaign!
Make sure to ask for your support to be restricted to the ependymoma fund at NBTS. Be creative!
Learn more at braintumor.org/take-action/f…
Receiving a brain tumor diagnosis at the transition into adulthood brings unique challenges, fear, and profound uncertainty.
In this moving story, Samaiele shares what it was like to face a diagnosis of ependymoma at age 18: braintumor.org/news/the-day-…
We want to hear from you! Share your why & personal stories with others.
Whether you are a survivor, caregiver, or loved one, your story helps us drive awareness & help others understand the reality of this disease & the strength of our community: braintumor.org/brain-tumors/…
Looking for a meaningful way to involve the whole family in Ependymoma Awareness Day?
Our CERN coloring pages are more than just a creative activity — they are a way to spark important conversations & show support for the brain & spine tumor community: cern-foundation.org/uploads/…
Liz P. reminds us all of the power of sharing our stories.
As we look ahead to Ependymoma Awareness Day on June 10, we invite you to register for our virtual program that day & hear from others in the ependymoma community: braintumor.org/research/init…
#CERN20 #EpendymomaAwarenessDay
Mark your calendars! Ependymoma Awareness Day will be recognized on Wed., Jun. 10.
This year, as we celebrate 20 years of the CERN Foundation, we invite you to register for our virtual program, where you’ll hear directly from our ependymoma community: braintumor.org/research/init…
In honor of CERN’s 20th anniversary & #EpendymomaAwarenessDay (June 10), we invite those impacted by ependymoma to share their story.
Whether survivor or caregiver, your journey drives awareness & shows our community's strength.
Share here: braintumor.org/brain-tumors/…
#CERN20
Ependymoma Awareness Day will be marked by a virtual program uplifting voices from across the community.
The event highlights the challenges faced by patients, survivors, care partners, researchers & clinicians while raising awareness of this rare cancer: braintumor.org/research/init…
Patients, survivors, care partners, and medical professionals from around the world dedicate June 10, 2026, as Ependymoma Awareness Day in honor of the 20th Anniversary of CERN!
Learn more: braintumor.org/research/init…
CERN Foundation retweeted
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.
CERN Foundation retweeted
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…
CERN Foundation retweeted
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
Read the CERN Foundation Year-End Letter & Report from the National Brain Tumor Society @NBTStweets: braintumorcommunity.org/site…
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