SEPTEMBER IS NATIONAL HYDROCEPHALUS AWARENESS MONTH

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). 

THOUGHTS & PRAYERS TO OSO LANDSLIDE SURVIVORS

Just wanted to add our heartfelt thoughts and prayers to the survivors of the Oso, Washington landslide.   It has been such a shock to everyone.

I also wanted to add our group's thanks to the first responders and the subsequent folks who are helping to search for survivors and clean up after this horrific disaster.

My mother's family is from a small town in Iowa, about the same size as Oso.  I totally understand the connections of the community members.

Brain Awareness Exhibit

BRAIN AWARENESS OPEN HOUSE--SO NEAR!

The 2013 Brain Awareness (BAW) Open House is coming up on Tuesday, the 5th of March!  Can't believe it is coming up so soon.

I picked up some of the giveaway items, so kindly donated by KING5 Television, for our exhibit.  One of our topics this year is about how weather (specifically the barometric pressure) impacts those of us with shunts.  It ties is with the weather dvd that KING5 donated.  Their donations are always welcome additions to our table(s) at the event.

We still have some giveaway items from last year and are expecting some items from other sources in the coming days.  We'll have lots of 'stuff', which is always great.

We will be seeing several hundred kids from Washington state schools--everything from private and home schooled kids to public school students.  In addition, we will be seeing lots of parents and teachers.

I'm already brainstorming for next year's exhibit.  Hard to believe that we've been part of BAW for over 12 years.  How time flies!  Lots of surprises, hopefully. 

I'm hoping to be able to post pictures from this year's event on the blog shortly after returning from the event.

Yesterday I found a number of periodical articles on hydro that were published in February, 2013.  I just skimmed them, since I was at the library and running out of time on the library computer.  I'd love to include some of the articles and information in our BAW exhibit.

AUGUST MEETING

This was a wonderfully productive meeting!  We discussed Hydrocephalus Awareness Month (Sept) & how to promote it & the group.  We brainstormed some ideas.  Unfortunately, the state of Washington doesn't do anything to promote Hydrocephalus Awareness Month, or hydrocephalus in general.  I tried generating some interest in it several months ago, hoping for a more supportive response.  Disappointing, but only proves that there is a need for more public awareness!

We also discussed aspects of shunts--in terms of pain, itching & post-surgical responses we've had.  Very interesting.

We also discussed Kathi Goertzen's passing & her courageous fight against her agressive (benign) tumors for the last 14 years.  Our group's thoughts & prayers go out to her & her family.  Her public memorial will be August 19th at 1 pm, at Fisher Pavillion near the Seattle Center.  Specifics can be found at KOMO TV's website.

Along the same lines, we talked about how some tumors can cause hydrocephalus.

We also discussed different types of seizures some of us have.

Again, it was a very interesting, productive meeting.  We look forward to the Sept. meeting!

JUNE 2012 MEETING

As always, it was great seeing our group again.  Time went by so fast.

Among other things, we discussed the upcoming Hydrocephalus Awareness Month in September and ways we can bring awareness to the condition & to the group.  We had a promising lead with a local radio personality who expressed support for the group & our mission.  However, that seems to have fallen through.  Hopefully things will change before Sept.  It would be great to do one or two radio interviews, talking about various aspects of hydrocephalus.

I got an email from an unknown person, who was asking about shunts.  In general, there are SO many of them and so much research going on at any given time that it is impossible to tell what type of shunt or even if it is specifically for hydro.

I'm looking forward to the next meeting, on July 21st, from 12:45 to 3:00 pm.  As always, we welcome drop ins & kids, as well as families, friends, caregivers & those of us living with the condition.  The Casey Room at Swedish Cherry Hill Campus has been a great meeting room for us.  It is located inside the dining room, just down the hall from Starbucks!

May 2012 Meeting

The May meeting was very informative and we had a lot of fun--as usual.  We discussed the Charlie Rose Brain series.  I really want to buy it!

We also had a great conference call with one of our members on the east coast.  It was great talking with her.

We have also been discussing doing some additional outreach to caregivers, particularly parents--both those with lots of experience dealing with hydrocephalus, as well as other brain issues.  Recently, a young man in Puyallup, Washington received a TBI after being assaulted.  He is now in rehab, but has had life altering brain trauma.  I haven't heard if hydro is part of his TBI or not.

As always, I'm looking for more 'stuff' to include in the 2013 Brain Awareness Open House exhibit.

Unfortunately, we didn't get to meet a couple of new folks as we had hoped this month.  Maybe at the June meeting.

Can't believe that we are almost to June already!