Monday, January 27, 2014



The February, 2014 issue has a great cover article on the brain and scientific research.  Definitely worth the read.  They talk about upcoming possibilities, as well as recent developments.  Didn't see anything about hydrocephalus specifically, but still it was very interesting.

I know that I've been accused of being against brain research, which is NOT true.  I'm just frustrated by this 'need' some have to 'fix' hydro and who see all of us with it as needing to be 'fixed'.  There are so many breakthroughs yet to come, generally, in neuro-research, I find it facinating.  There was a time when the medical community knew nothing of folic acid or its role in congenital hydrocephalus.  Knowing about it has greatly reduced the number of congenital hydrocephalus.  If only those in the media would define what 'neural tube defect' is, it would be more clearly understood.

No matter what the breakthroughs in neuroscience research are when it comes to the brain in general and hydrocephalus specifically, there are so many causes (accident, concussion, TBI, spontaneous--NPH...) that there can never be one definitive, one-size-fits-all 'cure' out there.  Prevention is the best option, which means education and knowledge.  I've mentioned to a researcher about my theory that my family may have (on my mother's side) a particularly low folic acid lcvel.  Back in 1901, when my great-uncle died of hydrocephalus at a month of age, folic acid wasn't known about.  His hydro 'just happened".  Maybe it was just a statistical occurance, but the theory could actually be fact, but that doesn't appear to be an area of interest for many researchers or their funders.

Education and being the living examples of living well with hydrocephalus is why the support group takes part in the annual Brain Awareness Open House event at the University of Washington.  We don't all 'suffer' with hydrocephalus, we live with it and have productive lives.

Tuesday, January 21, 2014


Plans for our exhibit are underway.  As always, we have the dream list of what we would like to have at the event and the more realistic plan.  This year we have a couple of opportunities to have some giveaway items and some personal appearances.  Unfortunately, both require money.
My dream is to have our own reusable bags to give away to the kids, as well as 'stuff' to have in the bags that are brain and/or hydrocephalus oriented.  In years past we have had donated bags, which we still might have, but they always promote businesses, without our group name on them.  It would be nice to add that to the offering.
I just got an email letting me know that one of the personal appearances is possible!  Even if it would be for 1-2 hours of the event, not necessarily the whole event, it would be great to have.  Now the real challenge begins, raising the funds in a short amount of time.
I've been wanting to have this appearance at the booth for a long time and we are so close to making it happen!!

Wednesday, January 15, 2014


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!