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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
This series of blog articles is written by members of the ependymoma community. Some are ependymoma survivors and others are caregivers. 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.