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March 2014  
In This Issue
Research Update
Support and Education Update
Advocacy and Awareness Update
Hydrocephalus in the News - Raising Awareness

 

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 her monthly blog, Hydrocephalus Association CEO Dawn Mancuso shares the results of our Stakeholder Survey eliciting input from our members on the state of HA and direction for the future of the association.  Read More 

 
March 10, 2014, marks the 50th anniversary of the recognition of NPH as a distinct medical condition, allowing countless people access to the treatment needed to return to active lifestyles after possibly years of living with misdiagnosed dementia. Join the Hydrocephalus Association as we commemorate this year. 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. With your membership gift of any amount, HA promises to put your generosity to work by operating a toll-free support line, providing free educational resources including a new webinar series, and advocating for the unique needs of every member in our community. Please take a moment to send your membership gift today! No amount is too small and every member gift counts in helping HA to fulfill its mission. Send My Gift 
Research Update

A recently published study, the first of its kind, analyzes hydrocephalus research funding from NIH over 10 years and concludes that more researchers are needed in the field as well as alternative funding sources if we are to move the hydrocephalus research agenda forward. Read more  
 
The Hydrocephalus Association and the Rudi Schulte Research Institute (RSRI) announce a joint research venture with Dr. Mark Wagshul which proposes the use of magnetic resonance elastography (MRE) to determine the role brain compliance plays in pediatric hydrocephalus. Read More 
 

The Adult Hydrocephalus Clinical Research Network Planning Committee finalizes the policies and procedures for collecting data from adult hydrocephalus patients at its 6 clinical centers and reviews protocols for its first clinical study. Read More

 
From the HCRN Blog
The Gerber Foundation recently awarded Dr. Chevis Shannon, Research Assistant Professor & Director of the Pediatric Neurosurgery Clinical Research Initiative at Vanderbilt University, and HCRN investigator, a grant to evaluate the impact of post hemorrhagic hydrocephalus (PHH) on neurodevelopmental outcomes in premature infants. Read More
 
Shared from our friends at  Seattle Children's Hospital 
Dr. Tamara Simon, MD, MSPH, and her research team from Seattle Children's Hospital have discovered a clue that could help doctors better understand and treat hydrocephalus. Read More
 
From the HCRN Blog:  
Dr. John Kestle is returning to Primary Children's Hospital in Salt Lake City, UT, as a pediatric neurosurgeon and Vice Chair of Clinical Research, for the University of Utah Department of Neurosurgery. Read More
The Hydrocephalus Association has become the leading non-profit funder of hydrocephalus research. Professional members enjoy the benefits of the association 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.Read More

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!
  
The Hydrocephalus Association is excited to announce our new video blog series, "Through a Mother's Eyes: The Journey with Hydrocephalus." Join Debby Buffa each month as she answers a new question from our community. 

Through a Mother's Eyes: The Journey with Hydrocephalus  
 

The Hydrocephalus Association is now accepting applications for our 2014 Scholarship Program. The scholarship program was established in 1994 to provide financial assistance to capable and promising teens and young adults who have been dealing with the ongoing challenges and complexities of hydrocephalus. Happy 20 year anniversary to our scholarship program! Read More

 

In her monthly blog for the Hydrocephalus Association Teens Take Charge program, Madeleine Darowiche challenges all of us to practice random acts of kindness throughout the year. Read More 

 

We have a NEW guest blogger for the Hydrocephalus Association Teens Take Charge program. Meet Henry and join the conversation on Twitter. Use #TeensTC. Read More

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? The Hydrocephalus Association (HA) is looking for you! The Board of Directors of HA has recently chartered its Advocacy Committee to work on issues of interest and concern to the hydrocephalus community in an issues-oriented, non-partisan way. If you are interested in serving on the committee, please submit an application via email to advocacy@hydroassoc.org. 

  

Advocacy Committee Application

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 
Hydrocephalus in the News - Raising Awareness
Frank is a 9 month old Chihuahua-dachshund mix and, alongside 2 year old Dylan Lipton-Lesser, the two are raising awareness for hydrocephalus across the U.S.
BroadcastMed launches a new Neurology Channel.
The NVDaily.com reports on Tracy Barb, a Woodstock, Virginia, resident with hydrocephalus who is unable to afford treatment to install a live-saving shunt.
The Boston Herald reports on a brain injury app called Constant Therapy that is designed for patients with traumatic brain injuries as well as patients with speech and learning disorders. The app combines science-based tasks with advanced analytics.
Researchers at the University of California, Berkeley, are working on a drug to help prevent a common protein found circulating in our blood from crossing the blood-brain barrier after a brain injury. This protein was found to cause seizures and the possible development of epilepsy in brain injury victims.
Bloomburg reports that the Defense Advanced Research Projects Agency (DARPA) will explore the use of probes implanted in the brain to help reverse memory loss caused by traumatic brain injury (TBI).
Science Codex reports that researchers have mapped the core white matter pathways in the brain and show which connections may be most vulnerable to traumatic brain injury. Termed the white matter scaffold, this mapping defines the information architecture which supports brain function.
In the National Mirror of Nigeria, Mr. Afolabi Fajemilo shares the story of his son, Festus, exposing the struggle many parents face in Nigeria when confronted with a diagnosis of hydrocephalus and spina bifida. The Fajemilo family founded the Festus Fajemilo Foundation to help other parents learn about the condition and treatment options and wade through cultural stigmas and financial hurdles. The foundation is part of the Hydrocephalus Association Community Support Network.
Amber Fantaci, a Kidsday Reporter, of Long Island's Newday, shares her story of living with hydrocephalus. Amber's story helps raise awareness for this condition that is the leading cause of brain surgery in children. Thanks, Amber!
Dr. Rob Naftel of Vanderbilt University traveled to Uganda to learn the new surgical treatment for hydrocephalus, endoscopic third ventriculostomy (ETV) combined with choroid plexus cauterization (CPC). Training under Dr. Benjamin Warf of Boston Children's Hospital, who pioneered the procedure, Dr. Naftel will be able to apply the technique to his current practice, expanding a multi-site outcomes research study led by the Hydrocephalus Clinical Research Network (HCRN), which Vanderbilt joined in 2013.
The Washington Post reports leading Boxing and Mixed Martial Arts groups met with Senator Harry Reid (D-NV) and Senator John McCain (R-AZ) to commit $600,000 for a study on repeated brain trauma by Cleveland Clinic's Lou Ruvo Center for Brain Health in Las Vegas.
KFVS12 shares the story of Dacota Carter, diagnosed with hydrocephalus at birth, who currently thrives, despite his early diagnosis and a number of other medical challenges.

The Philadelphia Inquirer details the story of medical professionals trying to determine the sudden onset of hydrocephalus in a 48-year old Philadelphia woman.  

The NFL and General Electric (GE) will fund a University of California, Santa Barbara (UCSB) study that will look at an early detection method using imaging known as biomarking, a tool capable of measuring physiological or molecular processes and is used as a standard in clinical health.

Dylan Lipton-Lesser, who was born 11 weeks prematurely, acquired hydrocephalus from a brain infection that resulted in 15 brain surgeries and 101 days battling to recover in the NICU. In a video that has gone viral on social media, Dylan receives hearing aids and is able to hear sound for the first time. Laugh with joy with Dylan!

Meredith Vitrano acquired hydrocephalus as a pre-teen. The now 24 year-old has been shunt free for 2 years after Dr. Edward Ahn of Johns Hopkins Children's Center performed an endoscopic third ventriculostomy.

This email was sent to amanda@hydroassoc.org by blog@hydroassoc.org |  
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