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Committed to improving the care and outcome of people with ependymoma through community support and research efforts.
(844) 237-6674
Joined March 2011
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:
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RT @NBTStweets: Join us on Thurs., July 3rd at 7 p.m. ET for our monthly Grief Support Conversation. The group welcomes anyone who has los….
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RT @NBTStweets: Honored to welcome pediatric #braincancer org Dragon Master Initiative @beadragonmaster as the newest member of the #MyTumo….
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RT @NBTStweets: Our 2024 Annual Report shows the powerful impact made possible by you — together, we advanced brain tumor research, drove m….
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RT @NBTStweets: 🦒 Tomorrow we gather at the @sfzoo for the #NorCalBTWalk. Deepest thanks to all the sponsors who make this event possible….
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Thank you for participating in National Cancer Survivorship Month and supporting Ependymoma Awareness Day!.
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Sharing personal stories about living with a rare disease can be a powerful way to advocate for change and raise awareness. Hear about Robert's experience navgiating an ependymoma diagnosis for over fourty-five years of survivorship:
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Today is Ependymoma Awareness Day!. On this day, we bring attention to this rare cancer and the unique challenges faced by ependymoma patients, survivors, care partners, researchers, and medical providers. Join us:
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Most rare diseases, including ependymoma, lack approved treatment options. Raising awareness helps to improve understanding, support research, & ultimately work towards better diagnoses & treatment options. Take action & share these important facts with your community.
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The featured speakers for the 2025 Ependymoma Awareness Day represent the voice of the community with both patient stories and experts in the field of neuro-oncology. Register today to participate virtually and to receive a recording of the webinar:
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Hear from neursurgeon Dr. Costas Hadjipanayis about the importance of a second opinion and questions to ask your medical team. Register for the Ependymoma Awareness Day webinar: #EAD2025 #epENDymoma #EpendymomaAwarenessDay #CERNFoundation #CERNButterfly
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Mike and Megan Patterson will share about their experience with ependymoma during the Ependymoma Awareness Day webinar. Register today!. #EAD2025 #epENDymoma #EpendymomaAwarenessDay #CERNFoundation #CERNButterfly
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Hear from pediatric brain tumor researcher Dr. Mariella Filbin about the importance of tumor testing for ependymoma during the Ependymoma Awareness Day webinar. Register today: #EAD2025 #epENDymoma #EpendymomaAwarenessDay #CERNFoundation #CERNButterfly
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RT @NBTStweets: 🗓️ Mark your calendar!. This year’s #AdvocateFromYourState: A Virtual #Head2Hill event will take place on Tuesday, Sept 9,….
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RT @NBTStweets: 🏛️ Updates from the Hill 🏛️. In our latest video, Eli reports on what’s happening in D.C., how it impacts the brain tumor c….
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RT @NBTStweets: Watch to hear more about pending budget and appropriations proposals, the reconciliation bill (including its inclusion of t….
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RT @NBTStweets: Want to boost our message?. Visit our Action Alerts page to send messages to your representatives in Congress today: https:….
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RT @NBTStweets: The NBTS team had a fruitful time at the recently-concluded #ASCO2025. A lot was learned and many connections were made th….
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RT @NBTStweets: 🧠 MYTH: Clinical trials are too risky. ✅ FACT: They’re closely monitored for safety, and participants often get more frequ….
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Daniel Godsil will share his experience with his daughter's ependymoma diagnosis during the Ependymoma Awareness Day webinar. Register today! . #EAD2025 #epENDymoma #EpendymomaAwarenessDay #CERNFoundation #CERNButterfly
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