hydrocephalus

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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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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Those Battling Hydrocephalus Come Forward to Share Their Stories

When UFC fighter Ray Borg shared how hard it was dealing with his son’s hydrocephalus, away from the rest of his family in New Mexico, it brought together an entire community in Colorado dealing with this disease. Families from across Colorado started writing about their stories online and shared them with 9News Denver. They not only […]

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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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Congressional Action on ADA Legislation

43 brave Senators have stood up against legislative efforts to weaken the Americans with Disabilities Act, and we hope those impacted by hydrocephalus will take a moment to thank them for their efforts. 

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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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Announcing National Conference Financial Aid

The Hydrocephalus Association is pleased to announce a financial aid program for the 15th National Conference on Hydrocephalus which will be held in Orange County, California June 28-30, 2018.

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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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College grad with hydrocephalus

2018 Scholarship Cycle OPEN!

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

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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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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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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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Get to Know Our Conference Host City

For those that are traveling we hope you will take a couple days to explore this wonderful host city for our conference and enjoy the world-famous theme parks and, stunning beaches, designer shopping, delightful fairs and so much more.

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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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Book Your Hotel for Conference!

Housing is open for the National Conference on Hydrocephalus which will take place on June 28-30, 2018 at the Renaissance Newport Beach in Orange County, California. Book your hotel!

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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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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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First Year of College – CHECK! (Blog Series)

Fiona’s first year of College was a success! Are you entering college next year? Join the blog series and be a part of the conversation!

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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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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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