Parent Blog

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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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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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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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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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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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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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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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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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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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 Action Network

Election 2016: What Does this Mean for the Hydrocephalus Community?

The incoming Administration and Congressional Members will take office with new policy priorities. On healthcare, some will remain the same, while others will change.

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Election

The Candidates on Healthcare

It is important to know before you vote what each candidate’s position is on healthcare and how it will impact you and your family managing hydrocephalus.

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Hydrocephalus Association Education Days

Hydrocephalus Education Days Provide Connections

Complementing our National Conference on Hydrocephalus, we are proud to host Hydrocephalus Education Days in select cities across the USA.

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Rare Artist Contest

Rare Artist Contest Now Accepting Submissions!

Enter the 8th annual Rare Artist contest and be eligible to win a trip to Washington, DC, to see your artwork displayed on Capitol Hill.

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Neuroscience Nurse

Mary Decker Mentorship Award: Call for Nominations

Nominate a dedicated Neuroscience Nurse with demonstrated excellence in neurosurgery, specifically with hydrocephalus, for the Mary Decker Mentorship Award!

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Hydrocephalus Teens Take Charge Scholarships

Announcing Our 2016 Hydrocephalus Association Teens Take Charge Scholarship Recipients!

The Hydrocephalus Association (HA) is pleased and honored to announce our 2016 Hydrocephalus Association Teens Take Charge Scholarship Recipients.

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Hydrocephalus Association Scholarships

Announcing Our 2016 Hydrocephalus Association Scholarship Recipients!

The Hydrocephalus Association (HA) is pleased and honored to announce our 2016 Hydrocephalus Association Scholarship Recipients.

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Teen with Hydrocephalus

Living Hydro: One Family’s Journey

Our Charlotte Hydrocephalus WALK Chair shares her daughter’s journey with hydrocephalus.

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Governor Terry McAuliffe with Hydrocephalus Families

Virginians Bring Hydrocephalus Awareness to the Governor

Members of the Virginia Hydrocephalus Association Community Network meet Governor Terry McAuliffe and share their personal hydrocephalus stories.

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Premature Baby Posthemorragic hydrocephalus

HA Convenes the First International Workshop on Posthemorrhagic Hydrocephalus

Workshop on Posthemorrhagic Hydrocephalus (PHH) proves the potential for researchers to alter the course of the development of hydrocephalus and its long-term outcomes.

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qFamily with daughter with hydrocephalus

Hydrocephalus Receives National Attention

TLC aired a feature piece on ‪hydrocephalus that featured three families – Roona in India, Lyndos in Uganda, and Parker in Oklahoma.

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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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Susan Fiorella, hydrocephalus advocate, with her son.

Together Towards Tomorrow

If we don’t act with a collective sense of urgency, nobody else will. It’s been more than 50 years since a significant improvement has occurred in the treatment of hydrocephalus.

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Hydrocephalus WALK in Indiana

Why I WALK – For a Better Tomorrow

The WALK has become so important to me because I know how it feels to be alone and confused after being diagnosed with hydrocephalus.

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