HA Updates

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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Hydrocephalus and Sleep

Sarah has a passion for improving her and other’s sleep quality. Having suffered from sleep deprivation and feeling the effects across her entire life, she realized the importance of optimizing her sleep.

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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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2017 Every Member Campaign

Your membership support of HA helps newly diagnosed families across the nation who are seeking our support and encouragement.
Read how your membership gift is making an impact!

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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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Where we Stand on the Issues

On April 10, 2017, the Hydrocephalus Association Board of Directors approved our position statements on key legislative issues. This is how we stand.

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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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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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Tackling Obstacles to Finding Care for Young Adults with Hydrocephalus

Summit unites a range of stakeholders to begin development of an action plan to create a system for transitional care for young adults with hydrocephalus.

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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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Obamacare Remains the Law of the Land

After much debate and negotiations, the American Health Care Act was pulled from the House floor before a vote and the Affordable Care Act remained in place.

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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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Jeff marathon runner hydrocephalus

Ever Wanted to Push Yourself to RUN?

Ever aspired to run a half or full marathon? Ever thought of running in honor of your loved one living with hydrocephalus? Do you have hydrocephalus and love to run?

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How Hydrocephalus has Impacted My Life: One Teen’s Story

Elizabeth, a Teens Take Charge guest blogger, shares how making a video about her journey with hydrocephalus has impacted her life and helped others.

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Hydrocephalus Advocates Join Rare Disease Week

HA staff were joined by members of our Hydrocephalus Action Network (HAN) to represent our hydrocephalus community in Rare Disease Week.

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Medtronic StrataMR Shunt System

Medtronic Addresses FDA Recall for Strata™ II/Strata™ NSC and StrataMR™ valves

The FDA notification regarding Medtronic Strata shunts have led to a number of questions from patients. Here’s what you need to know.

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Hydrocephalus and Disability Benefits

The Social Security Administration (SSA) provides support to disabled individuals through two separate disability benefit Programs: SSI and SSDI. Learn more.

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Neural Tube Defects (NTD)

Learn about the genetics of neural tube defects, which can lead to hydrocephalus.

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Top 2016 WALK to End Hydrocephalus Teams!

Congratulations to our Top 15 WALK to End Hydrocephalus Teams throughout the country.

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The Challenges of Transitioning to Adult Care

HA has long been aware of inequality in care for children and adults with hydrocephalus, and we are taking steps to bridge the gap.

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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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Dan Kricke, living with hydrocephalus

Aging Out of Pediatric Care: A Cautionary Tale

Four. That is how many different hospitals I visited trying to transition from a pediatric to an adult neurosurgery program in the midst of a shunt malfunction.

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Genetic Mutations and their Role in Congenital Hydrocephalus

Hydrocephalus has been shown to have multiple causes, including numerous genetic origins. Dr. Jenna Koschnitzky explores genetic mutations in a three blog series.

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Tackling the Challenges of Transitioning from Pediatric to Adult Medical Care

The HA Transition Summit will discuss ways of improving the transition from pediatric to adult-centered medical care for patients with hydrocephalus.

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Brainy Camp Hydrocephalus

Sleep Away Camp for Kids with Hydrocephalus

We are proud to announce Brainy Camps’ new camp for children living with hydrocephalus. Brainy Camps is a subsidiary of Children’s National Health System.

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Call Congress

Call Congress on Changes to Obamacare

The Hydrocephalus Association encourages YOU to call Congress NOW about impending changes to Obamacare. Share your opinion and experiences. Shape the discussion!

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Whole Foods Features Cider With A Purpose

Jason Spears and his brother Patrick founded Locus Cider in March of 2015 inspired by real, tough people, a.k.a children with hydrocephalus.

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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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