2015 Ependymoma Awareness Day Outreach

— Categories: Press Release     Posted on June 6, 2015

In a groundswell of international support, patients, caregivers, professionals and advocates participated in a variety of events marking May 5, 2015, as Ependymoma Awareness Day.

Collectively, these events helped to create a greater understanding of ependymoma. Below are a few of the Ependymoma Awareness Day activities that were held around the world this year!

Awareness Day in South Africa

(Lonehill Johannesburg, South Africa) Ependy Angels held their second annual Ependymoma Day butterfly release on Layla’s birthday, May 9. Layla, who was diagnosed in 2013, not only inspired but also made it known in South Africa that ependymoma does exist. The butterfly release was held in Lonehill Johannesburg where survivors and sufferers joined hands with family and friends as they personally release butterflies in honor of all the heroes before them and angels like them. Superman made a special appearance for the birthday girl. Children made their own butterflies, while Ependy Angels educated parents about ependymoma. Sharyn O’Neil (founder of Ependy Angels and mother of Layla) mentioned the research done by the CERN Foundation and all the efforts to inspire the families, giving hope.

Proclamations

On a local level, many chose to participate in activities to create awareness about ependymoma where they live. The day was officially proclaimed Ependymoma Awareness Day by numerous elected officials, including: Chapel Hill, Harford County (MD), Houston, Illinois, Indiana, Memphis, North Carolina, Pennsylvania, Texarkana, Texas and Washington D. C.

Butterfly Release Held in San Diego, California

(San Diego, California) Jennifer, diagnosed with anaplastic ependymoma, held her fourth annual butterfly release with her friends and family at a local park.

She sent out invitations to friends and family, asking them to attend the event to support Jennifer and the CERN Foundation.

Coopers Go Gray T-shirt Campaign

Cooper was diagnosed in 2008 at age 13 with grade 3 anaplastic ependymoma, a malignant brain tumor. He endured several surgeries, chemo, radiation and clinical trials, but unfortunately these treatments were not enough and the tumors recurred. Sadly, Cooper passed away May 5, 2013 at age 17.

However, during this time, Cooper worked on several projects to help other kids with cancer, always saying that many of them had it worse than he did. His family tries to continue his legacy of giving and hope for a cure. They sold t-shirts online, featuring artwork created by Cooper and $920 was donated to the CERN Foundation.

Community Shares Virtual Butterfly

We encouraged the ependymoma community to share a virtual butterfly in honor of their loved one and promote greater awareness of ependymoma. ‪

Ependymoma Awareness Day T-shirts

We asked the ependymoma community to submit a quote about hope to go on the Ependymoma Awareness Day t-shirt. We received numerous quotes. Thank you for your participation.

The winning quote was by Maisie W., “HOPE – Holding on for possibilities that are extraordinary.”

 

Here are some quotes submitted by others:

  • “Getting better together.”
  • “When the world says give up, hope whispers … try one more time.” 
  • “God gives his toughest soldier’s the hardest jobs”
  • “HOPE = Holding on for possibilities that are extraordinary.”
  • “Let’s do it!” 
  • “We are not just survivors, we are fighters.” 
  • “Sometimes bad things happen in our lives to put us directly on the path to the best things that will ever happen to us.”
  • “Some see a hopeless end, while other see endless hope.” 
  • “HOPE…It’s a brain thing.”
  •  “Hope fights for our future, and changes everything. Hope for a cure, to end ependymoma.” 
  • “Gods got this.”
  • “Hope is more powerful than any treatment.”  

Others Create Awareness

Many families, patients, bloggers and advocacy organizations spread the word about Ependymoma Awareness Day and their experiences with local news services, on Twitter, Facebook or their personal blogs. Here are some of those posts.

Share your story or blog with us!

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