hydrocephalus

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 Irvine Marriott 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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PT Tips for NPH Patients

By the time Trish was diagnosed with NPH and had shunt surgery, she had lost her ability to walk unaided, so her neurosurgeon gave her a prescription for physical therapy.

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Opportunity to Contact Your Senators on Health Care Reform

Are you concerned with provisions of the BCRA that could adversely affect your ability to maintain healthcare coverage? Learn how ​YOU can ​be sure your voice is heard.

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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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Healthcare Up for Vote in Senate

Contact your Senator TODAY and urge them to oppose the AHCA before voting ends on Friday. If passed into law, the AHCA as it currently stands would be devastating for individuals with preexisting conditions, like hydrocephalus, and millions of Americans.

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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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Cognitive Therapy for NPH Patients

If you have Normal Pressure Hydrocephalus (NPH) you might find Cognitive Therapy useful. Trish Bogucki explains what it consists of and shares some tips for others who might be in the same boat she was in.

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A Letter of Love to My Son With Hydrocephalus

The day I was told you had hydrocephalus my heart felt like it was breaking, not because I felt there was anything wrong with you, but because I was afraid you would have to endure pain.

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World Birth Defects Day: Global Alliance calls for better prevention, care and research for Neural Tube Defects (NTDs) and Hydrocephalus

The PUSH! Global Alliance joins forces with over 70 participating organizations in promoting and increasing global awareness of birth defects on World Birth Defects Day.

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Heading to College in the Fall? NEW BLOG SERIES!

Fiona kicks off a new blog series with words of advice and tips for those entering college next year. Join the blog series and be a part of the conversation!

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Ciliopathies and their Role in Congenital Hydrocephalus

Mutations in a number of genes coding for cilia structure, function, and regulation, have been associated with congenital hydrocephalus; these are called ciliopathies.

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En Garde! The Sport of Fencing and Hydrocephalus

Jonathan, who lives with spina bifida and hydrocephalus, shares discovering fencing as a form of exercise and competition.

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My Transition from Pediatric Care to Adult Care

The Dr. Seuss books and wooden “choo-choo” train in the waiting room were clear indicators that it was time for me to transition to a physician that treated adults.

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Over 500 Adult Hydrocephalus Patients Enrolled in Registry

HA is proud to fund the AHCRN as they move research from bench to bedside to find new treatments, preventions and cures for adults living with hydrocephalus and NPH.

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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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