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 awareness 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. 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.
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), National Cancer Institute NCI-CONNECT in Bethesda, MD
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 a creative art experience led by art therapist Alby Gyimah-Boadi from the Marcelle and Patrick Leahy Art Therapy Program at Children’s National, a slideshow featuring photos from previous Ependymoma Awareness Day events beginning in 2012, remarks from ependymoma survivor Savannah Mason, and more. The time together was a powerful reminder of the importance of connection and raising awareness for rare disease. View the NBTS Head to the Hill Welcome Reception and Ependymoma Awareness Day Event Video.
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 Day - Virtual Community Gathering
As a part of Ependymoma Awareness Day, the National Brain Tumor Society and the CERN Foundation hosted a virtual meeting on May 5 for ependymoma survivors and care partners to support, share and connect. This special opportunity was designed to inspire and empower, serving as a reminder that having a rare disease does not mean you are alone. A total of over 15 ependymoma survivors, care partners, and advocates came together to participate in this important effort! Participants were encouraged to share what ependymoma awareness day meant to them and how they were recognizing the day. The virtual session was a special time to connect with others in the ependymoma community. There were powerful and emotional moments and one participant commented “There’s strength in numbers. There’s encouragement in community. And we need to rally each other to remain hopeful.”
Ependymoma Awareness Outreach
On a local level, the ependymoma community participated in activities to create awareness about ependymoma where they live. In a groundswell of international support, patients, care partners, professionals and advocates participated in a variety of events marking May 5, 2024, as Ependymoma Awareness Day. Read the 2024 Ependymoma Awareness Day Outreach Report for more information. Please share your awareness day and Brain Tumor Awareness Month activities with us by contacting administrator@cern-foundation.org. View the 2024 Ependymoma Awareness Day photo gallery and the 2024 Ependymoma Awareness Day Video Playlist.