2024 Ependymoma Awareness Day Outreach Report
— Categories: Press Release Ependymoma Community Posted on May 31, 2024
In a groundswell of international support, patients, care partners, medical professionals, and advocates participated in a variety of events marking May 5, 2024, as Ependymoma Awareness Day.
Collectively, these events helped to create a greater awareness of ependymoma and garnered momentum from around the world. Below are a few of the 2024 Ependymoma Awareness Day activities that were held around the world this year!
Golf Outing Hosted in Honor of Ependymoma Survivor
In 2020, Mike Patterson’s wife Megan was diagnosed with a rare brain and spinal tumor known as an anaplastic ependymoma (WHO grade III), a very aggressive and difficult to treat disease. However, working with the great people at the CERN Program at NBTS, they were able to find the right doctors for the best treatments available. As a way to give thanks, the Gray Matter Classic is a golf tournament focused on raising money and awareness for CERN and its parent organization National Brain Tumor Society.
Public Butterfly Release Hosted at Local Park in Burnet, Texas
A second annual butterfly release was hosted on May 5, 2024 at a local park in Burnet, Texas by Katrina’s Cocoon Crew, a nonprofit founded by Katrina Malin, who died in 2021 at the age of 22 after a lengthy battle with brain and spine cancer. The organization continues to honor her legacy through community events such as the butterfly release, which was open to the public. Local news coverage highlights details of the event.
Butterflies hold a special meaning to the Malin family as Katrina and her husband released butterflies after their fairytale wedding in 2020. Now the Malin family uses the butterfly release to honor Katrina’s memory and raise awareness for their local community. Katrina’s Cocoon Crew continues on to honor Katrina’s legacy of giving to others.
Kansas City Proclamation Recognizes Ependymoma Awareness Day
Kansas Governor Laura Kelly signed a proclamation making May 10 Ependymoma Awareness Day in the state. Kansas resident Chris Childress has been instrumental in ensuring Ependymoma Awareness Day is recognized in the state. Childress does this in honor of his daughter and all other Kansas families impacted by the rare disease. Childress comments, “I think awareness leads to fundraising (private or government), fundraising leads to research and research leads to better treatments options, outcomes and eventually a cure. I want the public to understand the need for more funding for brain cancer research, and specifically ependymoma. If a proclamation can encourage others to give individually or support government funding of brain cancer research then we are closer.”
Community Outreach through Online Campaigns and Social Media Activity
Community members from around the world participated in sharing their story online through blogs and social media. Their willingness to share helps increase awareness about the rare disease and the reality of navigating a diagnosis and the challenges of survivorship. Some examples from the ependymoma community included the following hashtags: #CERNButterfly #epENDymoma #EpendymomaAwarenessDay #EAD2024 and #BTAM.
Team Tucker Tough - from the Smith Family
Today is Ependymoma Awareness Day. Our 2nd without T. There has been so much progress in the diagnosis and treatment of ependymoma in just the 6 years since Tucker was diagnosed….and yet SO FAR to go before a cure is found. Research for this disease is almost exclusively funded by generous individuals and organizations who make pediatric brain cancer research their priority. So this week…say his name….share his story….fight for these children who can not fight for themselves. Because awareness brings funding. Funding brings research and research brings cures. Missing our boy today and every day. #TuckerTough #epENDymoma #CERNbutterfly
