NAT GEO MAGAZINE BRAIN ARTICLE

NATIONAL GEOGRAPHIC MAGAZINE ARTICLE ON BRAIN

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.

PLANNING FOR BRAIN AWARENESS EVENT

PLANNING FOR THE BRAIN AWARENESS EVENT IN MARCH

 

 

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!!

 

 



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!

 

 



December 2013 Meeting

THE DECEMBER 2013 MEETING

The final meeting for 2013 was small, but successful.  We discussed several hydrocephalus and brain injury topics.  I am still trying to round up informational pamphlets to put into packets for the Seattle Police and other first responders.  NINDS sent me a pamphlet on hydrocephalus, which we appreciate.  I may include some of them in our exhibit/booth at Brain Awareness in March, as well as the informational packets.

We also discussed how the Affordable Care Act (ACA) is impacting us.  I'm still trying to find something that is affordable for me and will allow me to keep my current primary physician.  I really don't want to change, but may have to.  It is a real disappointment that the Washington state Medicaid program denied the facility my doctor is affiliated with in their coverage.

We also caught up with what has been going on with members since last month's meeting.  Great to hear that Brian's health is improving.  We miss him at meetings, but it is a long trek to get to Seattle.  Our thoughts and prayers are, as always, with him.

I'm still hoping to get more 'stuff' for the Brain Awareness booth this year, as always.  I'm also interested in finding other people in the community who have brain issue awareness and would be interested in spending even an hour or two of the four hour event, to help discuss the issue with the kids, parents and teachers attending.

HYDROCEPHALUS SUPPORT GROUP, INC. 2014 MEETING SCHEDULE

HYDROCEPHALUS SUPPORT GROUP INC MEETING SCHEDULE 2014

 

 

 

We meet on the third Saturday of each month, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  We welcome anyone wanting information/moral support in living with the condition of hydrocephalus.  Drop ins are welcome.

 

 

Our meeting was founded by parents and those (of all ages) living with hydrocephalus over 20 years ago.  Every story is unique, just as we are.

 

 

January 18th

February 15th

March 15th

April 19th

May 17th

June 21st

July 19th

August 16th

September 20th

October 18th

November 16th

 

The 2014 Brain Awareness Open House at the UW will be March 4th.  We look forward to seeing Western Washington students (grades 4-12) at the event, along with parents & teachers.  If any teachers would like to have us speak to their classes about hydrocephalus & living with the condition, feel free to contact us.

 



DECEMBER MEETING

Happy Holidays!  This will be the final meeting of 2013--the year went by SO fast.  I'll be posting the 2014 schedule shortly.  December 21st, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus will be our meeting this month.  As always, drop ins are welcome, as well as children & anyone wanting information about hydrocephalus.

I also want to take the opportunity to thank Swedish Hospital for their generous assistance in providing us with meeting space for the last several years.  It has been great having the space and being available to those in need of moral support in living with hydrocephalus.  We look forward to many more years of service to the community and the assistance of Swedish in that effort.

I would also like to thank the many friends of the group, and family members, worldwide, who have helped make the group a success.

I'm looking forward to 2014 with great anticipation.  Look forward to seeing new and familiar faces in the coming year.

The 'Knockout Game'

 

 

 

THE 'KNOCKOUT GAME'

 

 

How disturbing is this?!  Obviously, those participating in this 'game' haven't got a clue about the potential damage they can do with this.  Today's national news addressed a few of the deaths that were caused by these careless 'kids' who seem to think that it is 'fun' to knock someone out on the street.

 

As usual, I look at it from the hydrocephalus perspective.  This is one of the many ways that someone can acquire hydrocephalus--through a traumatic brain injury (TBI).  Hitting one's head against a sidewalk, curb or wall can/does cause such injuries.  I'm sure that this will be a subject of conversation at the December meeting of the Hydrocephalus Support Group, Inc.

 

I have no idea how this started or how to stop it.  I guess that until something happens to those who think this is a game, entertainment or funny it will continue.  As I've said before, someone who isn't hyper-aware of their brain isn't going to appreciate that precious cargo the same way as those of us who are living their lives very aware of their brain.  While I'm concerned about this in general, specifically, some stranger who isn't aware that someone already has a condition, like hydrocephalus or a TBI already, could SO easily prey on them, causing irreparable damage, or even death.  From everything I've seen/heard about this 'game', it is inflicted on complete strangers, so it is quite possible that someone with a pre-existing brain issue could be killed by these kids 'having fun'.

 

The November meeting was very productive.  We discussed ways of increasing our presence online and in Western Washington.  I'm looking at ways that we can get involved in more community events, as well as increasing the awareness of the condition with the general public, as well as first responders.

 

Also wanted to say Thank You to NINDS for sending us the newest hydrocephalus pamphlets to include in our media kits.  Looking forward to the Hydrocephalus Association's (HA) contribution of literature to include in the kits.

 

I'm also hoping that Seattle's new Mayor and his staff will include hydrocephalus awareness throughout the year, but especially during September (Hydrocephalus Awareness Month).

 

The Allen Institute, here in Seattle, is going to be expanding its brain research to covering CTE, which is great.  Founded by Microsoft's Paul Allen, the Institute has already done the brain mapping, which is available online.

 

I'll be posting the 2014 Schedule in the coming weeks.