Ependymoma Awareness Day 2022

Ependymoma Awareness Day 2022

Patients, care partners and medical professionals from around the world dedicate May 10, 2022 as the 11th annual Ependymoma Awareness Day!

Ependymoma Awareness Day

Join the CERN Foundation and the National Brain Tumor Society during Brain Tumor Awareness Month to commemorate the 2022 Ependymoma Awareness Day!  Ependymoma Awareness Day will be held on May 10 to represent the 10 different molecular groups of ependymoma and bring attention to the diversity of the disease. Held every year since 2012 as a global advocacy event, Ependymoma Awareness Day highlights the importance of an accurate diagnosis and the urgent need for better targeted treatments.

Ependymoma Awareness Day (EAD) was established in 2012 by the CERN Foundation as part of a global effort to shine a light on this poorly understood disease. Ependymoma Awareness Day aims to increase public recognition of this rare tumor and the urgent need for more clinical studies to improve diagnostic methods, develop better targeted treatments and improve outcomes for those living with this disease.  View the 2021 Ependymoma Awareness Day virtual event and read the 2021 Ependymoma Awareness Day Outreach Report for examples on ways to participate. 

Butterfly Release

On Ependymoma Awareness Day, the delicate and beautiful butterfly represents the spirit of the ependymoma community as a symbol of hope through change. The CERN Foundation and the National Brain Tumor Society, will commemorate Ependymoma Awareness Day on May 10, 2022 with a live-streamed virtual event at 1pm EST that will be available below and on Facebook live. The twenty minute program will feature awareness content, stories from the ependymoma community, and conclude with a butterfly release. 


Share Your Story on Ependymoma Awareness Day

As a part of Ependymoma Awareness Day, the National Brain Tumor Society and the CERN Foundation held virtual zoom meetings with other ependymoma survivors and care partners to share their stories. This special opportunity was designed to inspire and empower, serving as a reminder that having a rare disease does not mean you are alone. We successfull compelted three sesssions on May 10, 2022 with a total of over 35 patients and care partners!

Ependymoma Awareness Outreach 

Create Awareness Where You Live! On a local level, we urge you to participate in an ependymoma awareness activity and help create greater understanding of the disease. You could support awareness in the following ways:

Ways to Raise Awareness!

  • Watch the 2022 Ependymoma Awareness Day Virtual Event on May 10th at 1pm EST on this webpage or join the Facebook Live Event! You could also host your own personal watch party to engage your followers!
  • Get creative with the CERN Butterfly Coloring Page, Chalk Art, and CERN Hands for Hope activity and share on your social media page. Make sure to send us a copy and use the hashtags #CERNButterfly #hands4hope #GRAYMAY #BTAM and tag us @CERNFoundation
  • Share information on ependymoma with another person who has never heard of it!
  • Tell your medical team about Ependymoma Awareness Day! 
  • Document your awareness efforts on Facebook, Twitter, Instagram, or blog and use the hashtag #CERNButterfly #GRAYMAY #BTAM and tag us @CERNFoundation
  • Seek recognition from your local government or ministry of health!

Support Ependymoma Awareness Day

The CERN Foundation and the National Brain Tumor Society are currently engaged in a range of community outreach programs and support efforts designed to have a positive impact on the lives of children and adults with ependymoma, as well as their families and care partners. Please consider supporting these efforts by making a donation or creating your own online fundraising campaign


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Let Us Hear From You!

We would love to hear from you! Please feel free to share your experiences with us and submit information and pictures of your own activities so that we may include them in future events on our website, giving inspiration and direction to others as they get involved in Ependymoma Awareness Day! Contact us for help on ways to host your own event!

Stay Informed with the CERN Newsletter

The CERN Foundation is committed to informing you with the latest ependymoma news and research. Join our mailing list for monthly updates. View all newsletters