ETV

Endoscopic Third Ventriculostomy

Shunt versus ETV: Five year outcomes from the International Infant Hydrocephalus Study (IIHS)

The IIHS gathered data from more than 20 hospitals around the world, compared the effectiveness of shunts versus endoscopic third ventriculostomies (ETVs). This study started in 2005 and these are the five year outcomes.

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Is an ETV an Option After Shunt Failure?

Is an ETV an option after shunt failure? A recent review of 15 studies reported on the effectiveness of endoscopic third ventriculostomy (ETV) after shunt failure in children. Dr. Jenna Koschnitzky, National Director of Research Programs, summarizes the findings.

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Preliminary results from the International Infant Hydrocephalus Study

There are two common treatment options available for infants that suffer from Aqueductal stenosis: implantation of a shunt or an endoscopic third ventriculostomy

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New Tool Detects Pressure Non-invasively

Non-invasive tool may be instrumental in evaluating elevated ICP – a symptom of hydrocephalus and shunt malfunction.

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The Hydrocephalus Association wants to THANK YOU!

By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward!

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Over 500 Adult Hydrocephalus Patients Enrolled in Registry

HA is proud to fund the AHCRN as they move research from bench to bedside to find new treatments, preventions and cures for adults living with hydrocephalus and NPH.

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Hydrocephalus Association Scholarships

Announcing Our 2016 Hydrocephalus Association Scholarship Recipients!

The Hydrocephalus Association (HA) is pleased and honored to announce our 2016 Hydrocephalus Association Scholarship Recipients.

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Families Unite with Scientists to Prevent Leading Cause of Brain Surgery in Children

The Hydrocephalus Association’s annual Vision Dinner will serve as the catalyst for a focused research initiative that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

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Governor Terry McAuliffe with Hydrocephalus Families

Virginians Bring Hydrocephalus Awareness to the Governor

Members of the Virginia Hydrocephalus Association Community Network meet Governor Terry McAuliffe and share their personal hydrocephalus stories.

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qFamily with daughter with hydrocephalus

Hydrocephalus Receives National Attention

TLC aired a feature piece on ‪hydrocephalus that featured three families – Roona in India, Lyndos in Uganda, and Parker in Oklahoma.

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Hydrocephalus Community Network

2016 Member Impact Report

I hope you take great pride in all that we continue to accomplish with your support.

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Hydrocephalus WALK in Indiana

Why I WALK – For a Better Tomorrow

The WALK has become so important to me because I know how it feels to be alone and confused after being diagnosed with hydrocephalus.

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Adult with Hydrocephalus

The Power of Sharing

I look forward to going back to the hydrocephalus conference to reconnect with old friends, meet new friends and learn the latest and greatest information…

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Canada Embraces New Brain Procedure for Hydrocephalus

Dr. Jay Riva-Cambrin of Alberta Children’s Hospital is featured in Calgary Metro for his use of the Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization in infants born with hydrocephalus.

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St. Louis Doctors Among Few Performing ETVs

Because of the country’s high numbers of children with hydrocephalus, doctors, including Dr. David Limbrick of St. Louis Children’s Hospital, traveled to Uganda so they could learn the technique. Two years ago, Limbrick traveled 8,000 miles to the East African country for more than a week of intensive training.

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Hydrocephalus Surgery Team Haiti

Mixed Emotions: Heartbreak

Jamie Wright, Houston Community Network leader, went to Haiti with a pediatric neurosurgery team from Children’s Memorial Hermann Hospital. This is her experience.

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Generalizability in Research Studies

Research 101: Generalizability

The concept of Generalizability in research studies is especially important for individuals living with hydrocephalus because there are so many different causes.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Learning from Experience – A Reflection on Self-Acceptance as a Starting Point for Growth

TTC Blogger Madeleine Darowiche shares her insights about the challenge of accepting yourself and where you are today, in order to grow tomorrow.

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Dawn Mancuso, CEO, Hydrocephalus Association

From the CEO: Planning with the End Result in Mind

Hydrocephalus Association CEO Dawn Mancuso shares the aggressive strategic plan adopted by the Board of Directors that will guide the work of HA over the next 5 years – our Roadmap to a Cure.

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Michelle Fernandez living with hydrocephalus

WNYT Albany Raises Hydrocephalus Awareness

Benita Zahn of WNYT-TV in Albany delivers a comprehensive news story on an incurable brain condition called hydrocephalus.

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Dan Kricke, living with hydrocephalus

Realizing I Had Hydrocephalus

Dan Kricke talks about the first time he realized he had hydrocephalus when he was 5 and the various emotions he had along the way to adulthood.

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Dan Kricke, living with hydrocephalus

Telling My Story

Meet Dan, a new guest blogger lending his voice to our adult hydrocephalus community. We are excited for Dan to share different aspects of his journey each month.

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Hydrocephalus Research Webinar Recording Available

Hydrocephalus Treatment Part I Webinar NOW AVAILABLE

The Hydrocephalus Association’s webinar, Hydrocephalus Treatment Part I, is available online! Dr. Riva-Cambrin discusses the alternative treatments to shunting.

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Young woman with hydrocephalus

Making the Hydrocephalus Association a Part of My Legacy

At the age of 25, Haylea is thinking about how she will make a lasting impact in the hydrocephalus community through her volunteerism and estate planning.

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Endoscopic Third Ventriculostomy

Endoscopic Third Ventriculostomy (ETV) in Children: Prospective, Multicenter Results from the Hydrocephalus Clinical Research Network (HCRN)

What determines the success of an ETV for treating hydrocephalus? Dr. Kulkarni shares their initial findings gathered from across HCRN centers.

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Upcoming Webinar: Hydrocephalus Treatment Part I

In the next webinar hosted by the Hydrocephalus Association, Dr. Riva-Cambrin will provide a general overview of ETV and ETV/CPC.

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Brown Family Hydrocephalus Vision Dinner

The Greenville News Shares One Couple’s “Vision”

Tomorrow evening Craig and Vicki Brown will host the 2nd annual Vision Dinner in New York City. The event is featured in an October 10, 2014, article in The Greenville News titled, “Drive Owner Hosts Rare Disease Fundraiser.”

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The Journey with Hydrocephalus Through the Eyes of a Mom

Lisa Jasper shares the story of her 35 year old son, Tommy, and his complicated journey with hydrocephalus. Tommy’s spirit and Lisa’s honesty come through in this touching piece.

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National Hydrocephalus Conference 2014

2014 Conference Update – Preliminary Schedule Now Available!

The Hydrocephalus Association staff is happy to announce the release of our preliminary schedule for our upcoming 13th National Conference on Hydrocephalus, Community. Clarity. Cure., July 9-11, 2014, in Portland, OR.

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HCRN PI’s offer point and counterpoint of shunting and ETV/CPC

Counterbalancing articles in AANS Neurosurgeon about changes in the treatment of hydrocephalus and the impact of new procedures going forward make for interesting reading about the evolution of hydrocephalus treatment.

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Young Adults at Hydrocephalus Association Conference

Countdown to Conference: Conference’s Biggest Take-Aways

Haylea Blank shares the take-aways from attending two Hydrocephalus Association national conferences that have helped her manage her hydrocephalus into adulthood.

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Hydrocephalus Queen

Hydro Queen

Karly Rodriguez wrote this powerful and honest poem one month prior to her ETV procedure, after being diagnosed with hydrocephalus in 2012.

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Vanderbilt Doctor Travels to Uganda to Learn ETV/CPC

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.

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An ETV Gives Young Adult New Lease on Life

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.

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Research UPDATE: HCRN Semi-Annual Investigator Meeting Summary

Summary of the Hydrocephalus Clinical Research Network (HCRN) investigators and coordinators’ Fall meeting, November 7- 8, in Salt Lake City.

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Current Chicago WALK Chair Featured in Local News

Matthew Schwerha, reporting for the Barrington Courier-Review, interviews one of our current Chicago WALK Chairs, Katie Cook, who’s son Conor has hydrocephalus. The Chicago WALK took place on August 18, 2013 at Soldier’s Field.

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Chicago-area Mom Honors Memory of her Son at WALK

Matthew Schwerha, reporting for The NapervilleSun, interviews Amber Hiland, who’s son Carter passed away from complications of hydrocephalus, at the Hydrocephalus Association Chicago WALK, which took place on August 18, 2013 at Soldier’s Field.

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Looking Back…Moving Forward: The Need to Value Shunt Management

As the Hydrocephalus Association continues our 30th anniversary interview series, Ann Marie Flannery, M.D., shares her thoughts on young adults transitioning to adult neurological care and issues a call to action for society to value the management of shunts and the individuals living with them.

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Research UPDATE: Researchers in Hydrocephalus Convene in Greece

The International Society for Hydrocephalus and CSF Disorders (ISHCSF) held its 5th annual meeting June 28th – July 2nd in Athens, Greece. The meeting brought together hydrocephalus researchers from around the world to discuss the current state of research for all types of hydrocephalus.

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A New Meaning for the Word Freedom

Hydrocephalus Association CEO Dawn Mancuso talks about a new kind of freedom this 4th holiday in her monthly blog.

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