HA Updates

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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Normal Pressure Hydrocephalus Information

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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Support the Hydrocephalus Association by Shopping through AmazonSmile!

Did you know that you can use AmazonSmile and support HA while you shop?

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Update on Obamacare

Congressional leaders are moving to repeal Obamacare per the campaign promise of President-elect Donald Trump. Here is an update on moves to date.

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Hydrocephalus Scholarship

The 2017 Hydrocephalus Association Scholarship Cycle is OPEN!

We are now accepting applications for our 2017 Hydrocephalus Association Scholarship Program.

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Nike Freestyle Benefit Hydrocephalus

Hydrocephalus Shunt featured on Nike’s Air Max Zero

A hydrocephalus patient of Doernbecher Children’s Hospital designs a hydrocephalus shoe in the annual Doernbecher Freestyle event with Nike.

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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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Staff of the Hydrocephalus Association

2016 Year-In-Review

As we close out yet another banner year, we are grateful for all that we have been able to achieve through the support of our caring community.

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The Mighty

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership with The Mighty where stories of individuals living with hydrocephalus will be featured.

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NPH

Like Father, Like Son: An NPH Journey

One man watched his father decline into a state of confusion until diagnosed with Normal Pressure Hydrocephalus. Then he found himself traveling the same road.

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Hydrocephalus GivingTuesday Challenge

Historic #GivingTuesday for Hydrocephalus!

We have the chance to raise $80K in one day to support hydrocephalus research as well as programs and resources to support individuals and their families. #GivingTuesday is BIG this year!

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Hydrocephalus Professional Member Society

Why Join the Hydrocephalus Professional Member Society?

Professional members enjoy the benefits of the association working on your behalf to ensure greater coordination of research, identify and reach the patient population and provide training and educational opportunities tailored to the needs of the professional community. Join us today.

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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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What Can’t You Live Without?

Read Genesis Espaillat first-person account of life with hydrocephalus, which she wrote in honor of September being Hydrocephalus Awareness month.

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Smart Girls Making College Dreams A Reality

Fiona Wilcox, chair of the TTC Advisory Council, speaks at The College Board forum on attending college with a chronic medical condition.

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Hydrocephalus Action Network

Day of Action. Support the 21st Century Cures Act! #CuresNOW

Support 21st Century Cures Act (Cures), a bill that could change the lives of many patients by providing funding for medical research. Urge Congress to pass the Cures Act before the end of this year!

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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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