Hydrocephalus Awareness Month

September is Hydrocephalus Awareness month .

If you follow me on FB or Twitter, you probably know that already .

You might even be wondering why the month is almost over…. And I haven’t mentioned it at all on here .

I could take the easy way out, say I haven’t been on the laptop much– and blogging from my phone is a pain.

I could say I’ve been playing on Tumblr, and have just forgotten. 

I could point out all the other wonderful blogs about this month, and say that there’s nothing I could possibly add .

The list of excuses goes on. And in reality, they’re all half truths.

But…..that’s not all.

Things about this month just make me mad.

And since you’re reading my blog… I’m afraid you’ll have to indulge me.

First, why is one month any different from the others?
Yes .. having an awareness month is good for getting the getting the general public involved. But all of us who have it, or are deeply affected by it…. We should have this mentality all the time! We should always want to raise awareness.

Second, people are fickle.
On Twitter , people were all over RTing facts, trying to trend #hydrocephalus. Facts were also all over FB.
I mentioned on Twitter about contacting governments. Actually doing something to tell them we need more funding.
I got some RTs. A few people said that it was a waste of time to do so. Two people said they contacted their reps.
..
Really? Are we the same people preaching on Twitter & FB about needing more awareness?
What is that worth, if we don’t do anything to make a difference ourselves ?

Who are we to get angry that the world doesn’t care about our condition, if we don’t care ourselves?!

It seems like such a no brainer. But simply complaining about the lack of a cure , won’t change it.
We can’t will a cure into being.
We can’t wish for more research funding, & expect to get it.
We can’t keep hoping someone else will come along, & fight OUR battle for us. 

There are several hydrocephalus organizations around. National AND local. Find one, get involved.
Contact your government. Your law makers. Explain why we need funding.

Here is an event happening Friday. If you can, attend. Anyone from HA or the PHF can give you more information.

We–you and I– need to step up, and make a change. If for nothing else, so no one else has to go through what we do.

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One thought on “Hydrocephalus Awareness Month

  1. Joe Milan says:

    I have seen a baby with hydrocephalus and here in south africa johannesburg we don’t have the hydrocephalus association, maybe you can help.

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