hydrocephalus

How a Changed Congress Could Impact Hydrocephalus

On Tuesday, November 6th, voters went to the polls and made some significant changes to the U.S. Congress. Due to the bi-partisan nature of policy issues impacting the hydrocephalus community, this outcome represents both opportunities and challenges moving forward.

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Premature Baby Posthemorragic hydrocephalus

Honor Your Preemie HydroHero on World Prematurity Day

Nov. 17 is World Prematurity Day, which highlights the health challenges premature babies face at birth and beyond. For us at HA, World Prematurity Day is a way to draw attention to Posthemorrhagic Hydrocephalus (PHH), one of the most insidious forms of hydrocephalus.

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Hydrocephalus research presented at the international Europhysiology Conference

Alexandra Hochstetler was one of our ten Young Investigator Travel Award winners at the 2018 HACONNECT. 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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Congress Preserves Program Essential to Quality Hydrocephalus Research

Thanks to the efforts of a range of advocates, including the hydrocephalus community, Congress has preserved the Congressionally Directed Medical Research Program (CDMRP).

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Stem Cell Mutations Linked to Hydrocephalus

Could a genetic mutation explain why some people with congenital hydrocephalus experience neurological problems? That’s what a new study by Dr. Kristopher Kahle of Yale University suggests. The study was recently published in the journal, Neuron, and highlighted by Yale News. Read the full article  

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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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Three-Year-Old Dean “The Machine” Becomes Team Captain of First Hydrocephalus Endurance Racecar!

HydroDad Bennett Wilson wanted a creative and fun way to raise awareness and funds for hydrocephalus research & programs, so he built a Hydrocephalus Racecar! Learn more about his racecar journey and how you can help support the Hydrocephalus Racing Team at their first race!

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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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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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