If
you don’t know what Ependymoma is, read
the following posting. If you care about babies and children, read the following posting. If the
thought of some young couple having a young child with a brain tumor just tears
your heart out, read the following posting
and then go to: https://cern-foundation.org/?page_id=4882
I’m
reprising the following posting from April 18th, 2012 because I just
can’t write a better blog about this terrible, relentless, wicked disease that
whacks young, vulnerable innocent children and their parents.
What is ependymoma and why should I
care? (Originally posted April 18, 2012)
Earlier
this week I got an email from Ms. Bonnie Culbertson on behalf of the CERN
Foundation asking me to promote the Ependymoma Awareness Day which is tomorrow,
April 19th.
My
first reaction was “What is Ependymoma?”
While I don’t claim to be a brain tumor expert, I do feel like I know a
bit more than the average mope about brain tumors: I’ve had a brain tumor, I
write about brain tumors, and people write me about brain tumors.
So
I opened up Mozilla and went to my trusty ABTA bookmark to learn at least
something about Ependymoma.
According
to the ABTA, “Ependymoma is a rare type of primary brain or spinal cord tumor.
Primary brain and spinal cord tumors are a type of tumor that starts in the
central nervous system (CNS).
I
didn’t like the sound of that. My
Meningioma never penetrated my CNS (that I know of). Ependymoma starts
there…which can’t be good.
Then
I read that “These are relatively rare tumors, accounting for 2-3% of all
primary tumors.” Well that explained why
I hadn’t heard of it. I’ll also bet that, because it’s rare, Ependymoma gets
less than its fair share of research dollars
The
ABTA article went on to say “However, they (i.e. Ependymoma) are the most
common brain tumor in children. About one-third of pediatric brain tumors are
diagnosed in children under the age of three.”
Argghh,
that fact hit me right in the emotional soft spot. I hate it when small
children suffer. I remember waiting in
the surgical staging area for a craniectomy when two parents brought a scared
little girl in for surgery. She was spooked by the gowns, the strange people
wearing masks and the strange place. I don’t blame her; I was spooked by the
same things. Her mother and father struggled to calm her down as they put the
gas mask on her face. Her terrifying cries still haunt me a bit today.
So
as you may guess, I wanted to know how the CERN Foundation was going to
creatively and memorably build awareness about Ependymoma Awareness Day. I was thinking skywriting, interviews on Good
Morning America or maybe an email blast (or as I first spelled it, “blash.”)
Then
I remembered that this is a rare form of brain tumor and they probably have a
similarly “rare” budget. So instead of an email blast, or even a blash, I was
expecting a small email “pop.”
Not
surprisingly, they were way ahead of me.
According to their website, the “CERN Foundation will commemorate
Ependymoma Awareness Day with a mass butterfly release that will take place
during the semi-annual CERN investigator meeting on April 19, 2012…The
butterfly release will be streamed on the internet so that supporters around
the world can participate and share in this event “
Well
now, that’s kinda cool, so I bought one.
I plan to be watching the release tomorrow and, hopefully, picking out
my butterfly. (Personally, I think Blue Morpho butterflies are the prettiest.)
Here’s
the link to the CERN Foundation website where you, too, can buy a butterfly:
http://www.cern-foundation.org/
And
if you're a Blue Morpho fan, here's a link to a nice picture of one: http://www.butterflypictures.net/1-butterfly-pictures.html
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