Committed to improving the care and outcome of people with ependymoma through community support and research efforts.
Joined March 2011
- Tweets 12,120
- Following 778
- Followers 1,841
- Likes 2,612
1,082 Photos and videos
Pinned Tweet
18 Jun 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: cern-foundation.org/uploads/…
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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/…
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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
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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…
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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
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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…
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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…
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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.
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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…
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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
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31 Dec 2025
To our ependymoma community, best wishes for a warm and bright 2026.
We are thankful for you!
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26 Dec 2025
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!
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23 Dec 2025
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
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22 Dec 2025
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
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21 Dec 2025
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..."
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19 Dec 2025
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
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17 Dec 2025
Support the Ependymoma Fund at the National Brain Tumor Society @NBTStweets.
Give Today!
secure.braintumor.org/site/D…
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30 Nov 2025
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/awarenes…
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26 Nov 2025
Prioritize Your Support to the Ependymoma Fund at the National Brain Tumor Society this Giving Season: secure.braintumor.org/site/D…
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CERN Foundation retweeted
19 Nov 2025
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.
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CERN Foundation retweeted
19 Nov 2025
Your advocacy helps ensure that the urgent, unmet needs of the brain tumor community continue to be heard and addressed.
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