water on the brain

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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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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Sleep Away Camp for Kids with Hydrocephalus!

Camp Head Strong offers children and teens with hydrocephalus (ages 10-17) six days and five nights of summer fun, education, and social connections.

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Hockey Player with Hydrocephalus Wins Gold Medal in PyeongChang!

Adam Page, living with hydrocephalus and spina bifida, is a member of the USA Hockey Team that won the Gold Medal in the 2018 Paralympic Winter Games in PyeongChang!

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Countdown to Conference: Tips on making it affordable!

The 15th National Conference on Hydrocephalus, HACONNECT, takes place June 28-30, 2018 in Orange County, California. Join us! Here are tips to help make it affordable.

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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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Conference Program Available!

The Hydrocephalus Association staff and the program planning committee are happy to announce the release of our conference agenda for the 15th National Conference on Hydrocephalus, HACONNECT!

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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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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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A Writer’s World

Blair Patrick Schuyler talks about the challenges and elation of writing his first book, “Adolescence Interrupted”, and on growing up with hydrocephalus..

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College grad with hydrocephalus

2018 Scholarship Cycle OPEN!

We are now accepting applications for our 2018 Hydrocephalus Association Scholarship Program.

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Department of Defense Funds Two Research Studies on Hydrocephalus

Department of Defense funding of two hydrocephalus researchers reflects the success of the Hydrocephalus Association’s Research and Advocacy Initiatives.

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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 Reason for Hope this Holiday Season

Local Lucas, Kansas, performer sings to raise awareness for her son living with hydrocephalus, a chronic brain condition that has no cure.

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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

TAKE ACTION! Help Veterans Receive Telehealth Benefits

Take action today to support moves in the Senate and the House to support telehealth medicine for our veterans.

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What is Hydrocephalus? An Overview

Hydrocephalus is a neurological condition caused by an abnormal accumulation of cerebrospinal fluid, resulting in pressure on the brain. There is currently no cure, but it can be treated.

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What is Hydrocephalus?

Hydrocephalus is a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF), resulting in pressure on the brain. It affects over 1 million Americans, ranging from infants to seniors.

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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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Hydrocephalus Action Network

A Possible Cut in Hydrocephalus Research Funding from Capitol Hill

Congress is currently debating a bill that could have major implications for hydrocephalus research through the Department of Defense CDMRP program.

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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 Posthemorrhagic Hydrocephalus

A recent study expands these results to posthemorrhagic hydrocephalus in premature infants. Please take a moment to read more about this important research.

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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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healthcare

Graham-Cassidy Healthcare Bill

Time to take action! Information on how the Graham-Cassidy bill will impact health services in your state and individuals with pre-existing conditions.

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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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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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Arkansas Tech University Family on the Road to a Cure

The Crouch family is leading fundraising efforts in Arkansas for the Northwest Arkansas WALK to End 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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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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New Insights into Normal Pressure Hydrocephalus

A recently published study attempts to shed light on the long term outcomes of untreated iNPH by examining mortality rates, risk of dementia, and symptom progression in individuals with ventricular enlargement.

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New Study Seeks to Improve Outcomes After a Brain Bleed

Germinal matrix hemorrhage (GMH) is a brain bleed that occurs in approximately 3.5 per 1000 live births and remains a leading cause of mortality and lifelong morbidity in premature infants.

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The Importance of Environmental Enrichment

Learn more about a recent study that suggests stimulating environments can improve cognitive outcomes for children living with hydrocephalus.

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