Wednesday, July 2, 2014


This month's meeting I want to discuss ideas for  September's National Hydrocephalus Awareness Month.  I've sent out some feelers, but got no responses, for some ideas.  I was hoping to have heard back from some of them, either way.

I would like to see some of our members doing some radio and print interviews, if they are more comfortable doing that.  I had hoped that one of our members, who is a professional writer and reporter, would have been able to write something about living with the condition.

There should be some community events that we could take part in.  I've tried, for a couple of years now, to generate some interest in some of the area's magazines and online sites.  Unfortunately, people think of hydrocephalus as 'just' a birth defect and nothing more.  They also assume that we all have spina bifida and that we are all living lives of suffering.  I see Awareness Month as having the potential to defy those assumptions and stereotypes.

I know that articles aren't going to be a magical answer to this, but they could contribute to enlightening people about the facts of hydrocephalus.  Particularly that it can be acquired at any time in life.  Unfortunately, I haven't been able to find some answers to my own questions--like the numbers for acquired hydrocephalus in various age groups, excluding congenital.  That includes finding out the numbers for hydrocephalus acquired after a concussion, or several.  When it comes to the latter, research is still being done that could answer some of those questions.

September feels a long way off still, but 2014 is going by so fast!  Doesn't seem like it is July and Seafair time again, already.

As always, this month's meeting will be on the third Saturday of the month, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish's Cherry Hill campus (17th & Jefferson). 

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