September Meeting! National Hydrocephalus Awareness Month

Anticipating the September meeting coming up on Saturday, the 17th, from 12:45 pm to 3 pm, as usual.  The difference being that this is also National Hydrocephalus Awareness Month.  I've been posting a lot on my Facebook, taking every opportunity to share and 'like' others' work to promote awareness of hydrocephalus.

I would really like to do some tie-in promotions and several other things to generate interest and awareness.  It would also be great to get back to having an annual picnic again, as another community outreach effort.

It would also be nice to get some more of the hydro dolls and do a 'traveling' project, like the Gnome, complete with a Facebook page to 'follow' them on their travels, then auction them off at the end.

Looking forward to seeing the meeting regulars and possibly some new faces.

Reminder: October Meeting on 10/17

Just a quick reminder, this Saturday (10/17) will be the October meeting, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  Drop ins & kids are welcome.  It should be an interesting meeting.  Some members will be calling in and we'll be talking about 'Stir'!

Operation Wild--PBS

The PBS series, Operation Wild is great, in general. However, last night's episode was particularly interesting. They profiled a Sun Bear in Laos who has hydrocephalus! Vets & a team of specialists installed a shunt. I was a bit surprised that they didn't use a programmable, to minimize the invasive surgeries in the future. It also would have been easier on everyone, including the Sun Bear, to simply make most changes to a programmable shunt, as opposed to the invasive procedure with the 'old fashioned' shunt they used. I watched w/one of our group's members & it was great being able to identify with everything the team was doing! I'm sure we'll discuss this at Saturday's meeting.

July 2015 Meeting

We will be meeting in the Casey Conference Room on July 18th, from 1pm - 3 pm at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle). As always, no reservations are required & kids are welcome. The meeting is open to anyone wanting information about hydrocephalus and living with the condition.

THANK YOU, MEDTRONIC!

THANKS, MEDTRONIC

Thank you, from the bottom of our hearts, Medtronic for the shunt doll and supplies.  We greatly appreciate the gift.  It will be used for many years to come at our events, including Brain Awareness events at the University of Washington.  It will also be a great addition to our supplies for classroom presentations.

It was a welcome surprise to receive it yesterday when I came home.

I'll be taking it to the April 19th meeting at Swedish Hospital's Cherry Hill campus.  As always, we will be meeting in the Casey Conference Rm in the hospital's dining hall, from 12:45 pm to 3:00 pm.  We'll have a lot to discuss, in addition to the new doll.

Thanks, again, Medtronic!

HOW FRUSTRATING!!

September came and went with hardly a word spoken about National Hydrocephalus Awareness Month.  Frankly, little was said about National Alzheimers Awareness Month either.  Now we are into October and you can't swing a cat (as they say) without hitting on something pink or entire panels of talk shows talking about breast cancer.  Even there, men with breast cancer is barely mentioned.  Although I was pleasantly surprised to hear a local reporter talking about male breast cancer screening at the Mammography mobile.

Back to hydrocephalus, it is a shame that so little is said about it when the subject has so many angles to explore.  Tying it in with Alzheimers awareness, brain injury awareness, etc.  Talking about how it can be acquired at ANY age.  Bringing up NPH (Normal Pressure Hydrocephalus) and the 5-15% of cases of NPH that are first mistakenly thought to be Alzheimers or Parkinsons.  Found early, NPH is SO treatable!

I was hoping that some of actor Boris Kojo's interviews the last month or so would have included a discussion (or mention) of hydrocephalus, since it hits close to home for him.  But nothing.  It also would have been a great time for Shonda Rhimes (sp) of Grey's Anatomy to mention it, since the character of Zola has hydrocephalus.  I LOVE the fact that Zola is shown as an active child who happens to have hydrocephalus, not as a child who is always having surgeries & fulfilling that doom & gloom picture that so many paint of those of us living with hydrocephalus.

I was really hoping that some of the former football players and others with high profiles might do some PSAs for National Hydrocephalus Awareness Month, but nothing.

I'm waiting for the pamphlets and fact sheets to come in so we can put together the packets for the Seattle Police Dept.  I want to get as many of those packets out to the members of the police force so that they, as first responders, have a bit more knowledge about hydrocephalus, its causes and head injuries in general.  I'd also like to see some tie-ins with our group in raising awareness in Washington state, particularly Western Washington.  It really is important for those of us in the brain oriented community (be it hydrocephalus, brain injury, Alzheimers, Parkinsons, etc.) to come together & be part of the public discussion on brain injury, TBIs in terms of prevention, not just focusing on research and 'cures'.

It really is frightening to look at how much research, in general, is being halted because of the Government Shutdown.  Not to mention the support services that are suspended because of this.  It isn't just those with hydrocephalus living with a sense of isolation and a need to reach out to others living with the same condition.  Potentially, there are literally lives hanging in the balance because of this.  It isn't just adult lives either.  We know the importance of nutrition and brain health, yet programs like WIC (Women Infants & Children) is having to deny access to food and services (including education) to the most vulnerable among us--children.  No child left behind?!  Nutritional impoverishment can have lifelong consequences that leave them VERY far behind.  Of course, our focus is on children with already compromised brain health.

What a month!