Ependymoma Awareness Day

MAY 10

Around the world, the month of May is widely acknowledged as Brain Cancer Awareness Month. And this year,  May 10 has been recognised as the 9th Ependymoma Awareness Day, a day that is particularly special to our foundation as an ependymoma was the type of tumour Connor was diagnosed with. 

For 16 months, Connor’s brilliant mind, strong body and gentle soul faced off against an ependymoma. Like many others, his brains and brawn gave it all to fight against the poor odds and on April 20, 2013, Connor’s own battle ended.

What is Ependymoma?

They are a type of tumour that occurs in both children and adults, yet more common within the paediatric community. It is a primary tumour, starting in either the brain or spine, both of which are part of the central nervous system (CNS). Ependymoma tumours represent roughly 10% of all central nervous system (brain and spine) tumours in children.

Grades of Ependymoma

  • Grade I: Low grade tumours that grow slowly. Subtypes: sub-ependymoma, myxopapillary ependymoma
  • Grade II: Low grade tumours, occur in either the brain or the spine.
  • Grade III: Malignant, fast-growing tumours. Subtypes: anaplastic ependymomas

What is Ependymoma Awareness Day?

The Collaborative Ependymoma Research Network (CERN) Foundation established this day in 2012 to spread more knowledge and understanding of this lesser known type of brain cancer. By increasing the amount of people who know about the rare tumour, it helps us push for more clinical studies and more targeted treatments to improve both the diagnosis method and outcomes for all those living with ependymoma.

The Butterfly Release – How we raise awareness

To honour loved ones with ependymoma butterflies are released

all around the world both physically and virtually. Filling the sky and the online networks with bright colours and fluttering wings to bring hope and love to the day. The Butterfly Release also acts as a way to recognise medical workers and care partners that are on the journey with those battling ependymoma.

“The butterfly was chosen as a symbol to represent hope. Just as a butterfly dramatically changes its shape, so does the meaning of hope along this journey..” 

[Kimberly Wallgren, Executive Director of the CERN Foundation]