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Ependymoma Community Creates Awareness

For Ependymoma Awareness Day, we encouraged our community to participate and create Ependymoma Awareness Day activities from their home and share those activities with others. We adopted the mindset, Create and Connect, to inspire the virtual activities. Create ependymoma awareness and connect our community to resources and each other. Our community purchased over 150 t-shirts, colored and displayed their own butterflies using chalk or our coloring sheet, created origami butterflies, and donated to the 2020 Ependymoma Awareness Day campaign. View the photo gallery.

We released inspiring videos from members of the ependymoma community all day on May 3 from 9:00 a.m. to 9:00 p.m. on the CERN Foundation Facebook page. There were over 15 videos from our community featuring families and CERN advisors from all over the world. One of these videos included a live butterfly release from Kimberly Wallgren, President of the CERN Foundation. “Our stories unite us despite our differences. Regardless of our age or diagnosis, we share similar hopes and dreams when it comes to our future and the future of our loved ones,” shares Kim. We were able to reach over 30,000 views and made numerous connections and relationship interactions between members of our ependymoma community.

VIEW COMMUNITY VIDEOS

Coronavirus Disease Impact and Resources

The last few months have been extremely unique and presented our world with many challenges. Living with an ependymoma, you may already be feeling a sense of burden from existing health related concerns. These times are truly unprecedented and it important to do our best to take care of ourselves both physically and emotionally.

We have updated our resources to include some helpful links to important information on ways to stay healthy and up to date on the coronavirus (COVID-19).

Support Resources

Adult and Pediatric Caregivers

There is no denying the difficulty of watching a loved one go through the emotional and physical pain of being diagnosed with an ependymoma. And the moment symptoms begin, your life as a caregiver begins and brings its own emotional and physical battles, as well. Learn how to manage your role as a caregiver.

Caring for Myself and Family

You can never be prepared for the shock of learning that you or a loved one has cancer. Battling an ependymoma is an emotional rollercoaster. Some days are good, some days are bad and some days are both. Find resources to help you cope.

Questions to Ask About Support

Your medical team can help you better understand your overall care, including what to expect and support services available. View a list of questions to ask your doctor about support.

Survivorship

The transition after the treatment of your cancer ends brings mixed emotions and new challenges to cancer survivors and their loved ones. Empower yourself by taking control of your post-treatment care. Find tools needed to plan for survivorship.

Patient Grief and Support

The speed and suddenness of a diagnosis can be utterly overwhelming for all involved. Normal routines, expectations, and hopes for the future are often put on hold. As you face difficult treatment decisions or learn to cope with frightening symptoms, you may feel as if you are just getting by on a day-to-day basis. The grieving process often begins at the time of diagnosis. Find support when dealing with grief.

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