August Meeting

Sorry for the delay in posting about the August meeting.  As always, we discussed ideas for increasing awareness about hydrocephalus, as well as the meeting.  I'd love to see us get back to having an annual picnic.  It would also be great to be able to do some additional promotions.

I'm hoping that increasing our presence on Facebook will help.

I'll have to cut this short for now.

MediKin Demo Doll (Hydrocephalus) Update

We went to Goodwill this week and I looked at shoes for the doll. I got some CUTE sneakers for it (they go well with the jeans & sweatshirt jacket). I also got a pair of pink cowboy boots (they go great with the OshKosh dress) and four pairs of Sesame Street bootie/socks. Next time I'll look for some other items. The more we do to get creative with the doll the more accessible it becomes. We were already getting double takes from people, thinking that it was a real baby. That only increases with every added item. The great thing about that is that it opens the door for conversation, which is a great thing for us! I would really like to create a social media platform for the doll and have pictures following the doll on its 'travels'. It would be great to have a couple of other dolls and follow them on 'travels' further afield than Western Washington.

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!

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!