shunt

Hydrocephalus research presented at the international Europhysiology Conference

Alexandra Hochstetler was one of our ten Young Investigator Travel Award winners at the 2018 National Conference on Hydrocephalus. This past weekend, she presented her work at the Europhysiology Conference held in London, United Kingdom!

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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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Make Your Voice Heard During Hydrocephalus Awareness Month!

Hydrocephalus Awareness Month (HAM), held every year in September, presents a powerful opportunity to make our collective voices heard and spread awareness about hydrocephalus!

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My Incredible Experience at Camp Head Strong

I spent six days and five nights as a counselor at Camp Head Strong, the very first camp for kids with hydrocephalus. This was the second year of the camp, and judging by everyone’s excitement, I think it was the most successful camp of all!

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Choosing The Best College For You

Some of us with Hydrocephalus have the added stress of learning differences. These factors come into play when we start thinking about college. 

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Top Ten Takeaways from the 2018 HA Conference

I attended HACONNECT and hoped it would be an educational experience and it was, but it was also much more. Here are my top ten takeaways.

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Watch Recorded Sessions from HA CONNECT 2018!

Miss the 15th National Conference on Hydrocephalus, HA CONNECT? Recordings of the 19 live streamed sessions are now available! Register as a virtual attendee for $20 to access the 19 recordings!

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Balance Therapy Tips for NPH Patients

A few months ago, I noticed that my balance was deteriorating so I mentioned it to my GP at my annual physical.  He immediately ordered a CT scan and more Physical Therapy. 

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Join us as we say #NOMOREBS!

Brain surgery should not be the only treatment option for the over 1 million Americans living with hydrocephalus. Join the Hydrocephalus Association is standing up to say #NOMOREBS – #NOMOREBRAINSURGERIES – with our national awareness campaign.

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Stanley White: From Aerospace Engineer to NPH Advocate

87-year-old retiree dedicates much of his time to raising awareness about NPH, particularly among medical providers.

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New views on Postinfectious Hydrocephalus

A recent study published in Nature, Dr. Chay Kuo, out of Duke University, discovered a mechanism that may lead to the development of Postinfectious Hydrocephalus.

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Tracy Morgan Joined By Hollywood Actors and TV/Movie Execs for “In Stitches: A Night of Laughs”

For one night in Los Angeles, 700 people got to hear the hilarious antics of Tracy Morgan and several other comedians while raising awareness and funds for the Hydrocephalus Association’s research, support and education programs.

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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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CSF Shunt Entry Site Trial

The CSF Shunt Entry Site Trial has reached the 75% mark in patient enrollment, that is 385 patients enrolled!

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Patient Research Studies on Hydrocephalus

Tools To Help Patients With Hydrocephalus Make Informed Decisions About Their Health Care.

Dr. Thomas Beez and Dr. Hans-Jakob Steiger from the Heinrich-Heine-University in Düsseldorf, Germany have developed a new health care quality metric for shunt surgeries.

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Exercise Tips for NPH patients

I recommend finding an activity to help you challenge both your mind and body, and have fun while doing it!

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A Fundraising Story

It is interesting to see how many families truly are affected by hydrocephalus. It’s something a lot of people have never heard of… yet through social media, we connected with 4 different families all dealing with the same thing.

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The Vision to End a Condition that is the Leading Cause of Brain Surgery in Children

The Hydrocephalus Association’s annual Vision Dinner highlights the advances in research that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

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Hydrocephalus Action Network

Tax Overhaul may Affect Charitable Giving and Non-Profits

Congressional efforts to overhaul the tax code could have major implications for charitable giving and non-profit budgets and could lead to reductions in research, advocacy, outreach, and other services.

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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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Reflections From “Boozle Bear Sew-a-Thon” Event Participant

The Boozle Bears were fun to help make, and I hope they help children understand their condition, as well as raise money for the research I will one day be conducting!

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From Patient to Progress: New insights into preventing shunt blockages

While shunt implantation is a typical treatment option for people with hydrocephalus, there have been surprisingly few advances to decrease shunt failure rates since the 1950s

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New Theories in Fetal-Onset Hydrocephalus

Current research suggests that a cascade of events involving cell junctions, the VZ, and the SVZ may be the cause of fetal-onset hydrocephalus and its accompanying neurological disorders.

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The Power of Storytelling

Storytelling can be a powerful and influential advocacy tool in getting people to understand the breadth and depth of impact hydrocephalus has on individuals and families.Every person afflicted with Hydrocephalus has a story to tell.

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Research 101: Brain Development

We are continuing our series on the role of cell junctions and the ventricular zone in the development of hydrocephalus.

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Meet the HCRN Clinical Research Coordinators

The HCRN is fortunate to have a team of hard working, experienced coordinators who are responsible for study start up, running the study, and wrapping things up once a study ends.

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How I decided to have shunt surgery

Trish was diagnosed with NPH in 2015 and had shunt surgery then. Thanks to the surgery and several kinds of therapy, Trish is now back to doing what she loves, including a killer step aerobics class at her gym and singing with her husband in a community chorus

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How Tai Chi Helped Get Me Nearly Back to Normal

When it comes to treating balance issues that attend Parkinson’s and other brain and balance disorders such as hydrocephalus and aging, there’s only so much medication can do.

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Middle School Science Fair Features Hydrocephalus Booth

Raising awareness about the issue is the first step in finding treatment and prevention of hydrocephalus.

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Doctor holding a brain shunt

The Challenge of Diagnosing Shunt Dysfunction

Researchers aim to improve the way that physicians identify problems with a shunt implant

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A Look at New Shunt Technology

Biomedical engineers test a sensor that could help predict when a shunt revision is needed.

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2017 Rally For Medical Research

We are excited to invite YOU to join the HA staff to represent the hydrocephalus community at the 2017 Rally For Medical Research.

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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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Siblings Fundraise to Support Little Sister

“My goal is for Adora to be successful and get every opportunity that we do. Because there is no cure, I will work until one is found. I want to be as involved as I can be.”

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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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CSF Shunt Entry Site Trial

The CSF Shunt Entry Site Trial has reached the halfway mark in patient enrollment – that is 224 patients enrolled!

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2016 Innovator Award Announcement

The Hydrocephalus Association is pleased to announce the funding of three hydrocephalus researchers through the HA Network for Discovery Science (HANDS), Innovator Award.

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Student Spotlight: Jamie Wright Advocates For Hydrocephalus Awareness

Imagine having a neurological condition that most people have never heard of. Jamie Wright is on a mission to educate others about hydrocephalus.

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This #GivingTuesday was a HUGE success because of YOU!

Because of you and our generous donors that provided matching funds we were able to exceed our goal!

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NPH

Like Father, Like Son: An NPH Journey

One man watched his father decline into a state of confusion until diagnosed with Normal Pressure Hydrocephalus. Then he found himself traveling the same road.

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