Wednesday, July 23, 2014

July Meeting Update

We discussed ways to increase awareness of the group, our mission and hydrocephalus in general.  There are some tentative plans in the works for National Hydrocephalus Awareness Month in September, which is fast approaching.

We also have discussed more plans for the more distant future, including the 2015 September awareness month possibilities.

There is a possibility that we could do a Crowd Funding campaign to raise funds for an awareness campaign as well.  Specifics aren't firmed up, but a September campaign would be great--this year or next.

Lots of potential.

Tuesday, July 15, 2014


The July meeting is on July 19th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  As always, everyone with an interest in hydrocephalus is welcome to attend.

We do have a few things on the agenda.  I've been working on some promotional/marketing ideas for September--a few look like they are going to happen!  Very excited.

Monday, July 7, 2014

September: National Hydrocephalus Awareness Month

I'm looking at several options for September, to help raise awareness of hydrocephalus in Washington state.  September is going to be here before we know it!  Many of the ideas I've had would need to be planned out further in advance.  Maybe for 2015!

Ideally, I would love to have an event a week during the month for raising awareness.  I've contacted some people who are interested in including their businesses in this.  One thing I would like to do is a dinner or brunch type of event.  I'm looking for more ideas.

I've had a PSA idea in my head for awhile too.  It would be great to see that happen.

It IS Seafair time right now.  Someday I would like to see us have a place in the festivities.

While I know that many want to focus on raising funds for 'The Cure', our focus is on awareness of the many aspects of hydrocephalus and living the best lives possible with the condition.  There is still SO much to be done in this area.  There are aspects of research that are very compelling and we want to get the word out about those findings as well, we are simply not focused on funding research.

Saturday, July 5, 2014

Here We Go Again!

Let me begin by saying that I appreciate the dangers and challenges of the job(s) of first responders.  I understand that they are in a high stress job with lots of variables and that every situation presented to them has challenges, but that IS the job.

Just saw the video of the CHP officer using a citizen's head as a punching bag.  This seems to be the go-to place for officers to target, with little or no regard for the potential damage they can inflict.  Most probably don't even KNOW that they can be inflicting trauma to the brain that can cause many injuries, hydrocephalus being one of the many.  The victim isn't always capable of self-diagnosis in these situations.  Someone with no history of hydrocephalus wouldn't have the words to convey to a doctor anyway.

Apparently, this particular victim WAS taken to hospital and evaluated, medically and mentally.  I know of a couple local incidents where that wasn't the case.  In one instance the same officers who did the kicking about the head also thought he could "walk it off" and let him go home after declining medical assistance.  The police department rep I spoke with was obviously shocked when I told him that the victim could have had a brain bleed and been unaware of it, which could have led to brain damage or death.  He could have gone home, crawled into bed and never awoke the next morning.

I don't particularly care why the officer felt that this was necessary.  The point is, the risk is there and it is too great to justify in ANY situation I've seen documented.  The potential damage isn't the same as a bruised ego or a sprained ankle.

I also realize that most people aren't aware that hydrocephalus can be acquired at any age.  It isn't 'just' a birth defect.  It can be caused by any assault on the brain--intentional or not.  It can be caused by accident, brain tumor, concussive event(s), a brain bleed or anything that alters the production or flow of the cerebral spinal fluid surrounding the brain and spinal cord.  Slamming someone's head into sidewalks, highways or a building's exterior wall all put someone else's life at risk, somehow I don't see that as being justified in any of the situations I've seen documented. None.

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).