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Ependymoma Key Issues
— Categories: Categories: Press Release Ependymoma Community Posted on June 13, 2023
The Ependymoma Key Issue effort serves as a critical example for other groups that are looking for a launching point to address how their unique challenges and opportunities fit within the larger narrative needs of the global brain tumor community.
Ependymoma Essentials - Educational Video Series for Ependymoma Patients and Care Partners
— Categories: Categories: Press Release Ependymoma Community Posted on December 20, 2022
A community driven initiative designed to create educational videos that communicate reliable and trustworthy information in collaboration with leaders in the ependymoma community.
Tips From the Ependymoma Community for Children and Adults Starting Radiation Treatment
— Categories: Ependymoma Community Posted on October 21, 2022
We asked the ependymoma community to share useful tips for people starting radiation treatment and received good feedback from survivors, parents, and care partners.
NCI-CONNECT leads Survivorship Care in Neuro-Oncology Workshop in partnership with advocacy organizations including the CERN Foundation and National Brain Tumor Society
— Categories: Categories: Categories: Ependymoma Research Articles Press Release Ependymoma Community Posted on August 17, 2022
The CERN Foundation a program of the National Brain Tumor Society, proudly endorses 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 held virtually on June 20 and 21, 2021, addressing the advancement of survivorship care for people living with primary central nervous system cancers.
Intimacy and a Brain or Spinal Cord Tumor Diagnosis
— Categories: Ependymoma Community Posted on July 21, 2022
A rare disease diagnosis is isolating and impacts so many areas of life including the taboo subject of self-image and sexuality. After all, there may be no other factor as important in the ‘quality of life’ discussion as intimacy.
2022 Ependymoma Awareness Day Outreach Report
— Categories: Categories: Press Release Ependymoma Community Posted on May 27, 2022
In a groundswell of international support, patients, care partners, medical professionals and advocates participated in a variety of events marking May 10, 2022 as Ependymoma Awareness Day.
Saying Goodbye to the Patient Who Inspired the CERN Foundation
— Categories: Ependymoma Community Posted on February 18, 2022
While it was never his intention or desire, Dallas Mathile’s diagnosis with an anaplastic ependymoma in 2002 would spark 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.
Managing a Rare Disease During the Covid-19 Pandemic
— Categories: Ependymoma Community Posted on January 12, 2022
Hearing the phrase, “you have cancer” is terrifying. Learning that you have a rare type of cancer makes it even more daunting. Doing those things while a global pandemic is occurring complicates it all, which only adds to the pressure of the moment.
Ependymoma Key Issues Article featured in the 2021/2022 edition of Brain Tumour Magazine, published by the IBTA
— Categories: Ependymoma Community Posted on September 24, 2021
A collaborative exercise to raise awareness of the unique issues facing a rare brain and spinal cord tumor community.
What advice do you have for other ependymoma parents?
— Categories: Ependymoma Community Posted on September 15, 2021
We asked our community to share their advice for other ependymoma parents with a newly diagnosed child. We received numerous responses. Thank you for your participation! Read their advice for pediatric ependymoma families.
Childhood Cancer Awareness Month: It’s Complicated
— Categories: Ependymoma Community Posted on September 9, 2021
Ependymoma caregiver, Tamiko, shares insight into the different reactions from the pediatric cancer community during Childhood Cancer Awareness Month and offers words of wisdom to the brain tumor community.
Awareness Starts With You
— Categories: Ependymoma Community Posted on May 21, 2021
Ependymoma survivor, Jennifer, shares the importance of awareness and how internal awareness is step one. Jennifer writes “Awareness began for me when I began to worry about what felt like a little fire inside my left temple.” Read her second Ependymoma Community Blog entry titled 'Awareness Starts with You' to learn more about her personal experience with awareness.
Survivorship: What’s Next?
— Categories: Ependymoma Community Posted on January 13, 2021
Adam Holland writes about his experience moving forward after his diagnosis with ependymoma. He reflects on all that he has gone through and provides insight into the process of accepting his new normal. In this blog article, Adam reminds us all of the power of telling our story.
CERN Foundation to Become A Designated Program of NBTS
— Categories: Categories: Press Release Ependymoma Community Posted on September 17, 2020
National Brain Tumor Society (NBTS) and the CERN Foundation Announce Official Plans for CERN to Become a Designated Program of the NBTS
Taboo Cancer Topics
— Categories: Ependymoma Community Posted on March 30, 2020
Ependymoma survivor, Matt, shares how to bring up taboo cancer topics with your doctor - prognosis, intimacy, embarrassing side effects, second opinions and disagreeing with the treatment plan.
Get help! Don’t Fight Cancer Alone
— Categories: Ependymoma Community Posted on November 18, 2019
Ependymoma survivor, Matt, shares how to utilize resources the medical system makes available.
CERN Foundation Releases Ependymoma Community Blog Series
— Categories: Ependymoma Community Posted on August 26, 2019
Featuring a collection of articles written by members of the ependymoma community. Some authors are ependymoma survivors and others are care partners. They share their advice to help others with ependymoma cope with their illness.
Consulting with Dr. Google
— Categories: Ependymoma Community Posted on August 19, 2019
Ependymoma caregiver, Tamiko, shares how to navigate the internet when searching for disease information.
Coping with Scans
— Categories: Ependymoma Community Posted on August 5, 2019
Ependymoma survivor, Jennifer, shares how she copes with follow-up brain and spine scans and waiting for the results.
Be Your Own Advocate
— Categories: Ependymoma Community Posted on July 31, 2019
Ependymoma survivor, Sarah, shares three tips to help guide you through your ependymoma journey.
CERN Foundation Brings People Together
— Categories: Ependymoma Community Posted on July 3, 2019
CERN brings two ependymoma survivors together across the country and globe. Adam is from California and Allie is from Kansas. Both were diagnosed with ependymoma, in almost the same spots in the left occipital lobe.