The Close of National Hydrocephalus Awareness Month

September is coming to a close; 2014's National Hydrocephalus Awareness Month as well.  While we are looking forward to planning the 2015 Awareness Month, we still have a few days left in this year's.  Looks like the Seattle waterfront's Great Wheel will be lighting up for us!  Really looking forward to it.

The Great Wheel will have a picture on their Facebook page.  I'm hoping to be able to post a picture here as well.  I also sent a press release out to the tv stations to let them know.  Hoping that they pick up on it.

Next year we will have a bit more time to plan & get set schedules.  I'm also looking forward to next March's UW Brain Awareness Open House, again.  That is, right now, our biggest event every year.

LinkedIn is proving to be a great resource!

April Meeting

APRIL MEETING

Hard to believe that we are already looking at the April meeting!  It will be this Saturday, April 19th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus.  Drop ins & kids are welcome to attend.  We love seeing new faces!

We'll be talking about last month's Brain Awareness event at the UW and I'll be bringing the new hydrocephalus doll that was generously donated by Medtronic.  I've been thinking of a lot of projects where we could use the doll to help in explaining hydrocephalus to others.

Plans are also in the works for Brain Awareness 2015.

I'm hoping to post photos from the event shortly.

Looking forward to seeing everyone!

JANUARY 2014 MEETING REMINDER

JANUARY 2014 MEETING REMINDER

 

 

 

 

This Saturday (January 18th) is our first meeting of the new year!  Looking forward to seeing faces, old and new.  The meeting will be in the Casey Conference Room, from 12:45 pm to 3:00 pm.  Drop ins and kids are welcome to attend.

 

 

Planning for the UW Brain Awareness Open House event in March continues.  I'm waiting for more materials and hand outs to be delivered.  The open house event should be as interesting as in years past.  We should be seeing around 700 (give or take) kids from grades 4-12 at the event, as well as parents and teachers.  As a group, we are looking forward to being able to do some outreach and generate some interest in the brain, in general and in hydrocephalus specifically.

 

 

I've also been sending emails to every possible resource, to let those new to the hydrocephalus experience, of all ages, know about us.  I've gotten lots of positive feedback.

 

 

Conversations at this month's meeting should be interesting!

 

 



FRONTLINE: CTE/Concussion Issue 8/8/13

FRONTLINE:  CTE/Concussion Issue

The Brain Is Precious Cargo

What an interesting piece!  While the NFL, and football, has been the main focus in the media, CTE & the concussion issue applies to so many areas of life and sports.  Denial isn't, and has never been, the way to look at things that are unpleasant or that mean change.  Change is part of life.

"The brain is precious cargo" was a quote that resonated with me.  I've always felt that way, but then, I have had a lifelong awareness of my brain, and that of others, that wasn't like most people's.  That awareness comes from a life of having to be hyper aware of my brain, it isn't something most people give a second thought to.  That is why I don't think that a lot of parents, coaches and kids appreciate the potential damage that can be caused by these sports that have become such a part of communities--like football, soccer, etc.  Even if a soccer player 'heads' the ball on the 'sweet spot' of the head, it is known to cause temporary (& potentially permanent) brain damage.

Those doctors who commit themselves to brain research are great heroes.  Everything about the brain is unique and facinating, IMO.  I'm not talking about finding a 'cure' for hydrocephalus research, I'm talking about finding out about how the brain works and how damaged brains got that way.  It is pretty obvious that the 'cure' here is simply not putting the brain into these situations, although we all know that there are going to be those who are insistant upon doing it, no matter what.  I don't think that, as I said before, prior to the damage that they would truly appreciate what was being told to them by those who have been through it first hand, or as a parent, child or spouse.

These two hours just scratched the surface of this story.  There is SO much more to be discovered in the future through research, like Dr. Ann McKee & the Boston University CTE Center are doing.  Personally, I've thought seriously about leaving my brain and spine to science so they can find out more about my type of hydrocephalus.  Wish I could be there for the results!

I was also taken by the mistaken diagnosis of Alzheimer's and Parkinson's with CTE, which has also been the case for Normal Pressure Hydrocephalus (NPH).  NPH can be treated successfully if there is an early diagnosis.