April/May 2014  
In This Issue
The CEO's Corner
Research Update
Support and Education Update
Advocacy and Awareness Update
In the News

 

Our Mission:

 

Eliminate the challenges 

of hydrocephalus. 

 

 

   


Upcoming Events

HYDRO QUEEN

I have a secret to tell you 

I have found the Eighth Sea
It's within me
Yes, I am the Hydro Queen.

 

Sailing on my ship
Crashing over waves
Steering with precision through whatever comes my way
Leading my crew to your shores

 

The cabin shakes and I warn them of the impending storm-
They look at the blue sky
and laugh

 

Suddenly, the sea swells
Flooding the ship and pulling us down
Sending us in a spiral as the ocean swallows us up
Crashing us violently against the sandy floor

 

Slowly I peel my frozen hands off the helm
No use in steering now
I may look like a Queen, but I'm not so sure I like this crown anymore
It's grown heavy over the years.

 

A door flies open and hundreds of yellow butterflies emerge
Releasing with them all that was stowed away
The ship creaks and we begin to float upward
Breaking through the sea we sway twice and balance perfectly on the surface

 

I taste air for the first time and a tear steals away
Mixing with sea water down my cheeks

 

I surrender to the deck with my face towards the sun
I have never felt more royal

 

I let them take the wheel for now
I've got nothing to prove
They'll be amazed what I can do on dry land

 

Our map may have washed away but I know the trip by heart
I will never stop sailing to you.

 

 By Karly Rodriguez Copyright © 2014

 
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The CEO's Corner

 

In the 60s, a treatable form of dementia was a controversial claim. One man questioned what others were content to accept. Who was Dr. Salomon Hakim? Read More 

 
Normal Pressure Hydrocephalus receives the national audience it deserves in the April 2014 issue of the AARP Bulletin's article entitled "Am I Losing My Mind? - Conditions That Mimic Dementia." Thanks to our very own Dr. Milton Newman for being a voice for the NPH community. Read more
 
Nobody should face hydrocephalus alone. That's why HA launched the every member campaign to galvanize the community and raise critical funds to provide on-going support and awareness. Please take a moment to send your membership gift today! Every member gift counts in helping HA to fulfill its mission. Send My Gift 
Research Update

Counterbalancing articles about changes in the treatment of hydrocephalus make for interesting reading about the evolution of treating this condition.Read more  
The Hydrocephalus Association has become the leading non-profit funder of hydrocephalus research. Enjoy the benefits of HA working on your behalf to ensure greater coordination of research, identify and reach the patient population and provide training and educational opportunities tailored to the needs of the professional community. Join us today. 
 
Support and Education Update
The Hydrocephalus Association patient-centered National Conference empowers all of us with the tools and connections to address the medical, educational and social complexities of living with hydrocephalus. Join us in Portland, Oregon, July 9-11, 2014!
  
Can my child play sports? Debby tackles this question in this installment of her video blog series. You can see earlier episodes on our YouTube channel at http://bit.ly/PSGBjR 
 
Through A Mother's Eyes: Sports and Hydrocephalus
Through A Mother's Eyes: Sports and Hydrocephalus
 
I am a single mother of one of the single most amazing little girls I have ever known. I'm sure once you read some of this, you will agree.
 Read more

 

 

The Microsoft Alumni Foundation highlights Paul Gross as part of their alumni profiles for the What is it in life that you "can't not do" campaign. Read More

  
Haylea Blank shares her top take-aways from conference that have helped her manage her hydrocephalus into adulthood. Read more
 
Meet Ariel Yong. She joins Madeleine Darowiche and Henry Guion as a guest blogger for our teen and young adult community! Read her two blogs:

You Can Always SMILE! 
 

Shop at AMAZON throughout the year? Go to smile.amazon.com instead of amazon.com and Amazon will donate to HA every time you shop! Same site, same products, same service, different web address! It's not just for the holidays! Start shopping!

Advocacy and Awareness Update
 We're Looking for Advocates!

 

Do you have experience working with in the offices of an elected official, at either a national or state level? Have you ever been engaged professionally in the field of advocacy? Learn more about our Advocacy Committee. advocacy@hydroassoc.org. 

  

Advocacy Committee Application

We are actively seeking volunteers for "Trick or Treat for HA." Join other families in leading this fun, educational, awareness-building event. Learn how YOU can get involved!
The Hydrocephalus Association Kids to Cure Hydrocephalus WALK on Long Island kicked off our 2014 WALK season. Read more 
The WALK Chairs are busy planning WALKS around the country. Will you be attending a WALK this year? Find the WALK nearest you! 2014 WALK Schedule 
In the News

Casey Holter Essay Prize focuses on Neural Stem Cells and Fetal-onset Hydrocephalus

 

The Society for Research into Hydrocephalus and Spina Bifida has awarded the 2013 Casey Holter Essay Prize to Montserrat Guerra, Corresponding author, Instituto de Anatomía, Histología y Patología, Facultad de Medicina, Universidad Austral de Chile, Valdivia, Chile for her essay entitled, "Neural stem cells: are they the hope of a better life for patients with fetal-onset hydrocephalus?" 

Social Relationship Challenges in Children with Brain Injury
 
The Dallas Morning News reports on a recent study from Brigham Young University that found a relationship between brain injury and social withdrawal in children. Working memory and processing speed both play a critical role. The study appeared in The Journal of Head Trauma Rehabilitation. 
Wireless Shunt Monitor Being Tested in Manchester, England
 
The BBC reports that Royal Manchester Children's Hospital has implanted a new wireless system in two children with hydrocephalus that checks to make sure the shunt is working properly. The system transmits data to a box that the children carry around with them. 
This email was sent to amanda@hydroassoc.org by blog@hydroassoc.org |  
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