Ependymoma Awareness Day 2024
Patients, care partners, and medical professionals from around the world dedicate May 5, 2024, as the 13th annual international Ependymoma Awareness Day (EAD)!
Ependymoma Awareness Day
The CERN Foundation and the National Brain Tumor Society commemorated the 2024 Ependymoma Awareness Day during Brain Tumor Awareness Month with various activities and outreach events creating opportunities for community members to engage in virtual and in-person events!
Watch the 2024 Ependymoma Awareness Day Video highlighting awaress events hosted by our research partners!
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. Our goal with Ependymoma Awareness Day is 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.
On Ependymoma Awareness Day, butterflies around the world are released to honor loved ones with ependymoma, recognize care partners and medical workers, and support ependymoma research efforts. The delicate and beautiful butterfly was chosen to represent the spirit of the ependymoma community as a symbol of hope through change.
This year, NBTS invited ependymoma research partners to host their own awareness day events to elevate the collective voice of the greater community. From these unique and deeply meaningful events, videos and photos were collected, woven together, and shared in order to bring the global community together. The international awareness effort included participation from the following research partners:
Hopp Children's Cancer Center (KiTZ) in Heidelberg, Germany
2022 CERN and Robert Connor Dawes Foundation Scientific Fellowship
Medical University Vienna (MedUni) in Vienna, Austria
CERN PFA Ependymoma Translational Research Award
National Institutes of Health (NIH) in Bethesda, Maryland
NCI-CONNECT Partner
St. Jude Children’s Research Hospital in Memphis, TN
Ependymoma Research Effort in the National Brain Tumor Society’s DNA Damage Response (DDR) Consortium research initiative
Ependymoma Awareness Day was held on May 5, 2024 in connection to the Race for Hope in Washington, D.C. and the National Brain Tumor Society flagship advocacy event, Head to the Hill. Ependymoma community members were invited to attend the Welcome Reception that included a time to connect with community members. As a special way to acknowledge the day, there was an optional creative art experience led by an art therapist, slideshow, remarks from ependymoma survivor Savannah, and more.
Hope Themed Creative Writing Project Raises Awareness for Ependymoma
In preparation for the 2024 Ependymoma Awareness Day event, the CERN Foundation issued a call for creative writing pieces on the theme of hope. Ependymoma community members from all over the world submitted original short stories and poems in order to raise awareness for the rare disease and recognize the importance of hope. Often, people use creative writing to express thoughts and feelings that might otherwise be difficult to share. In addition, writing can help a person process their experience and offer overall wellness benefits. Sharing these individual stories with the larger community provides support and a reminder that you aren’t alone. Submissions were used for various awareness activities and shared with the community. Read the submissions!
Ependymoma Awareness Outreach
Create Awareness Where You Live! On a local level, we urge you to host your own community Ependymoma Awareness Day event or participate in an ependymoma awareness activity, both helping to create a greater understanding of the disease. You could raise awareness in the following ways:
Raise Awareness
- Get creative and participate in a butterfly-themed craft or art activity. Ideas include the CERN Butterfly Coloring Page and creating chalk art on the driveway, work, or school. Email us a copy and post it on social media with the tag #CERNButterfly.
- Share information about ependymoma with another person. Make sure to tell your medical team about Ependymoma Awareness Day!
- Document your awareness efforts on Facebook, Twitter, Instagram, TikTok, or blog. Use the hashtags #CERNButterfly #EAD2024 #epENDymoma #GRAYMAY #BTAM #NBTSConnect and tag National Brain Tumor Society!
We want to hear from you!
Please share your awareness day plans with us and submit pictures of your activities to administrator@cern-foundation.org. Content you share might be used to give other community members ideas for ways to get involved. View the 2023 Ependymoma Awareness Day photo album and read the 2023 EAD Outreach Report for more inspiration to get you started. Let us know how you plan to join us in this global advocacy event and raise awareness for ependymoma!