Announcing Ependymoma Awareness Day - May 5, 2015!
Announcing Ependymoma Awareness Day - May 5, 2015!
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Ependymoma Awareness Day is May 5, 2015!

Contact Your Local Officials!

You can create awareness of ependymoma where you live!  During our 2014 event, we were honored that Ependymoma Awareness Day was officially recognized by numerous municipalities around the U.S., including: Austin, Chapel Hill, Cincinnati, Columbus, Houston, Illinois, Indiana, Madison, Massachusetts, Memphis, Michigan, New Hampshire, New York, North Carolina, Ohio, Oregon, Pittsburgh, Santa Barbara, Seattle, Shelby County, Texas, Trigg County, Washington D.C. and Wisconsin.
Make sure your town is included in this list in 2015!  You can download a sample proclamation and sample letter asking your officials to recognize May 5, 2015 as Ependymoma Awareness Day!
Ependymoma Guide
Clinical Trials
Inspirational Stories
Podcast

Listen to the Winter Podcast

In this special podcast, we have highlighted some of the important research presented by CERN-supported investigators at the 19th Annual Scientific Meeting and Education Day of the Society for Neuro-Oncology.

Get Involved and Make A Difference

Now in its fourth year, this campaign is an international effort from the CERN Foundation in partnership with medical professionals, patients and caregivers from around the world. Together, we have designated May 5, 2015, as Ependymoma Awareness Day!

You can download the Awareness Kit as a guide to help you promote greater awareness of ependymoma both internationally and in your local community!

Butterfly Release

The CERN Foundation will commemorate Ependymoma Awareness Day with a mass butterfly release that will take place during the semi-annual CERN meeting. The butterfly release will be video-taped and posted on the internet that day so that supporters around the world can participate and share in this moving occasion. View the 2014 Ependymoma Awareness Day butterfly release.

We ask that you encourage those you know to purchase a live butterfly (or several butterflies!) that will be released during the awareness day ceremony!

Create Awareness Where You Live!

On a local level, we urge you to participate in an ependymoma awareness activity, helping to create a greater understanding of the disease.

You could support awareness in the following ways:

  • Share information on ependymoma with another person who has never heard of it!
  • Tell your doctor and healthcare providers about Ependymoma Awareness Day!
  • Document your awareness efforts on your Facebook page, Twitter account or blog and use the hashtag #CERNbutterfly!
  • Educate colleagues, co-workers, school groups and congregations!
  • Order and wear an ependymoma awareness lapel pin!
  • Release white butterfly balloons with the CERN awareness butterfly logo printed on them!
  • Seek recognition from your local government or ministry of health!
  • Raise funds to help with research!
  • Create your own Awareness Day event!

For more ideas, read how others around the world have commemorated Ependymoma Awareness Day. For more information, contact us.

Linda Shares Her Experiences to Help Others

CERN Inspiration Story
When I was nineteen, I was in labor with my second son. When my midwives asked me to push, my left arm went numb and flopped to the side of my body. I thought the cause was the epidural. Later that night, as I was eating my dinner, the same thing happened and I dropped my knife on the floor. These episodes became more frequent and with two young sons, I went to a doctor for answers. She referred me to the neurosurgery department. I had a spinal MRI, which turned out to be normal. I began having frequent seizures so they decided to do another MRI, this time on the brain. They found a tumor in the right parietal lobe.
I was put on anticonvulsants and scheduled for a brain biopsy. In 2000, I was diagnosed with a grade III ependymoma. Doctors decided to wait and watch and by the following year, but by the beginning of 2001, my seizures were becoming out of control. My whole arm would shake above my head in the air for over ten minutes at a time.
Craniotomy to Remove the Tumor
In April 2001, I had my first craniotomy to remove the tumor. I was told there was a risk of permanent paralysis in my left arm.
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