Research

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 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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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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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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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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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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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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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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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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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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So Many Reasons To Be Grateful

Olivia Maccoux shares her story and leads this year’s holiday drive to support the critical research work of the Hydrocephalus Association.

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Risk Factors For Posthemorrhagic Hydrocephalus

Learn about how Dr. Hannah Tully is uncovering risk and protective factors associated with the development of PHH, and the results of a large retrospective study she recently presented.

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Hydrocephalus Community Network

2016 Member Impact Report

I hope you take great pride in all that we continue to accomplish with your support.

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Hydrocephalus Vision Dinner Craig and Vicki Brown

Vision Dinner Aims to Accelerate Hydrocephalus Research

The Third Annual Vision Dinner successfully raised $500K to launch the Hydrocephalus Association Network for Discovery Science (HANDS).

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Annual Vision Dinner to Provide Funds to Find a Cure for Hydrocephalus

On October 15, the Hydrocephalus Association will hold its annual Vision Dinner to raise crucial funds to kick-start a breakthrough initiative aimed at curing hydrocephalus.

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Hydrocephalus Association Board Member Receives Prestigious Neurosurgical Award

Pediatric neurosurgeon Dr. John R. W. Kestle is awarded the Robert H. Pudenz Award for Excellence in Cerebrospinal Fluid (CSF) Physiology by Medtronic plc.

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Virtual Lab in Development to Find a Cure for Hydrocephalus

Scientists are focusing in on promising research aimed at finding a cure for hydrocephalus; and a new initiative is uniting them to accelerate their progress.

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Sample Size in Hydrocephalus Research Studies

Research 101: The Importance of Sample Size

Having a large number of participants reduces the risk of accidently having extreme, or biased, groups. Let’s find out why.

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New NIH NINDS Director Announced

Walter J. Koroshetz, MD, was named the Director of the NIH National Institute of Neurological Disorders and Strokes (NINDS).

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Randomization in Clinical Trials

Research 101: Randomization

Our Research Blog 101 series continues with a look at how randomization works in clinical trials.

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Hydrocephalus Research Webinar

Upcoming Webinar: The Next Generation of Hydrocephalus Researchers Part II

Next webinar: Optimizing the timing of interventions in neonatal hydrocephalus and new research on how brain cells react and recover under pressure.

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Hydrocephalus Association Webinar Banner

Upcoming Webinar: The Next Generation of Hydrocephalus Researchers

Join us for our next webinar on the latest hydrocephalus research with two former HA-sponsored Mentored Young Investigators.

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Research 101: Levels of Evidence in Hydrocephalus Clinical Research Studies

Clinical studies are often reported in the news, but how do you know if the study is strong? Dr. Koschnitzky describes how to interpret the results of a study.

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HA WALKS – Making New Friends & Raising Awareness

In her monthly blog, TTC member Madeleine shares how participating in HA WALKs in Florida helps her find new friends, raise awareness and funds, and have fun too!

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GIvingTuesday for hydrocephalus

Double Your Impact this #GivingTuesday!

This #GivingTuesday, for every dollar donated, a generous donor will match it up to $10,000! Your gift to HA will count twice as much – and mean twice as much!

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UT Researchers Receive $17 million for TBI Research

Researchers have been granted $17 million to advance TBI research. A TBI can be complicated. Everyone from football players to war veterans can be impacted.

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An Increase in Public Awareness Increases TBI Research

More attention is being given to TBI as increased focus on athletes takes center stage in the news.

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