Endoscopic Third Ventriculostomy

Conference Registration is OPEN!

Registration for our 15th National Conference on Hydrocephalus is OPEN! Join us in Orange County, California, June 28 – 30, 2018.

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Hydrocephalus Teens Take Charge Scholarships

Announcing Our 2016 Hydrocephalus Association Teens Take Charge Scholarship Recipients!

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

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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 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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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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National Hydrocephalus Conference

Countdown to Conference: Tips on making it affordable!

The National Conference on Hydrocephalus takes place June 16 – 19th in Minneapolis, Minnesota. Join us! Here are tips to help make it affordable.

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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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14th National Conference on Hydrocephalus

LEARN MORE: National Conference on Hydrocephalus

LEARN MORE: The 14th National Conference on Hydrocephalus will take place in Minneapolis, Minnesota, on June 16-19, 2016!

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Married to hydrocephalus

Building Our Life Together

In a heartwarming blog, Gayle openly shares the thoughts and emotions she experienced as she learned about the reality of loving a man with hydrocephalus .

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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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Hydrocephalus Teens Take Charge Scholarships

Announcing 2015 TTC Scholarship Recipients!

The Hydrocephalus Association (HA) is pleased and honored to announce our 2015 Hydrocephalus Association Teens Take Charge Scholarship Recipients.

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Hydrocephalus Patient Conference

MINNEAPOLIS: We are on our way! 2016 Hydrocephalus Conference

SAVE THE DATE: The 14th National Conference on Hydrocephalus will take place in Minneapolis, Minnesota, on June 16-19, 2016! Our patient-centered conferences empower all of us to understand, seek out and put into place the care, programs and services that will meet our needs now and well into the future.

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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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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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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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Happening NOW: First Annual Vision Dinner in New York City

The Hydrocephalus Association’s First Annual Vision Dinner, “A Time for Awareness; The Hope for a Cure,” unites politicians, neurosurgeons, scientists, advocates, and business leaders to raise the public profile of hydrocephalus and to share the current research initiatives and successes around the condition.

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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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Medical Alert IDs and Hydrocephalus

The Hydrocephalus Association discusses Medical Alert IDs and their importance for hydrocephalus patients in an emergency situation – without proper identification, common symptoms, such as headaches, dizziness, sleepiness and vomiting can be misdiagnosed and appropriate care could be jeopardized or delayed.

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Looking Back…Moving Forward: Adding a Touch of Pixie Dust

Tina Daniels, Hydrocephalus Association Support Group leader in Owasso, OK, shares her experiences living with hydrocephalus and her decision to lead a support group.

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Brain 101: The Ventricles and CSF Flow

As a follow up to the previous article on the anatomy and physiology of the brain, the Hydrocephalus Association would like to continue our learning and explore the terms we so often hear when dealing with hydrocephalus.

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Looking Back…Moving Forward: Growing Up with HA

Our Teens Take Charge (TTC) program provides support, training, awareness and fundraising opportunities so that teens can be an effective force in making their stories heard. As part of our interview series in commemoration of our 30th anniversary, our intern, Jessica Ford, sits down with Haylea Lynn Blank, to talk about growing up with hydrocephalus and her thoughts on the Hydrocephalus Association.

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Looking Back…Moving Forward: You’re Not In This Alone

As we look back and commemorate 30 years of supporting, educating, connecting and informing families, we ask where we would be without our volunteers. Our volunteer leaders across the country have helped weave the rich tapestry of our HA history. This week we sit down with our Virginia Support Group Leader, Annie Mason.

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HCRN Investigators Venture to Africa to Learn New ETV/CPC Procedure

Hydrocephalus Clinical Research Network (HCRN) investigators Drs Jay Riva-Cambrin and Curtis Rozelle are in Africa learning how to do Dr. Ben Warf’s new ETV procedure that includes choroid plexus cauterization (CPC). This is an exciting step in training prior to studying the treatment in the network.

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We are Family!

My name is Tracy, and I was born with hydrocephalus. My condition went undetected for 23 years, until one morning I woke up and drove to work and was not able to get out of my car. Read more about Tracy’s journey with hydrocephalus.

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Video Interview with Dr. Warf on his MacArthur Foundation Fellowship Award

The NINDS NIH posted a video on Dr. Benjamin Warf and his MacArthur Fellowship Award for his contribution to hydrocephalus research and treatment.

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ETV Procedures Creates Market Challenge to Shunt Manufacturers in Europe

The Millennium Research Group (MRG) – the global authority on medical technology market intelligence – has completed a study that shows that the the European neurosurgical and neurovascular medical device market will grow only slowly through 2016. Treatments such as endoscopic third ventriculostomy (ETV) are contributing to slowed growth for shunt manufacturers.

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Children’s Hospital in Houston Performs ETV/CPC Surgical Technique to Treat Hydrocephalus

Children’s Memorial Hermann Hospital in Houston, Texas, introduces the surgical treatment option of endoscopic third ventriculostomy (ETV) with choroid plexus cauterization (CPC) for hydrocephalus.

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