brain surgery

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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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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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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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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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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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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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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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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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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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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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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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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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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Hydrocephalus Mom Fights to Change Pennsylvania Truancy Law

Ashley Mantheiy, who has two sons with hydrocephalus, has worked with State politicians to introduce the Student Medical Leave Act of PA 2016

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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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Chicago WALK Chair featured on MIX Matters

Chicago radio station 101.9FM The Mix featured Katie Cook, our Chicago Hydrocephalus Association WALK Chair, on their weekly radio show “MIX Matters” with Susan Wiencek.

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Alcyone Lifesciences Inc

Device Currently in Clinical Trials May Delay the Need for Emergency Shunt Surgery

ReFlow System by Alcyone Lifesciences, Inc., currently in clinical trials, may prevent the need for an immediate emergency shunt revision for patients with hydrocephalus.

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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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A Business with Hydrocephalus as Part of Its Mission

Jason Spears started his hard cider company with a mission. At the heart of that mission is his daughter, Lucy, living with hydrocephalus.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Living with Anxiety and Hydrocephalus Part 4

I rarely spoke a word during my first year in college. I was so anxious. It seemed like everything that could go wrong, definitely did…Madeleine continues her blog series.

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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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Ohio Baby Born with Rare Brain Condition Doing Well

Baby born with encephalocele has had his brain gently placed into the proper position and treated with a shunt.

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Desiree Dyson

Miss Tennessee High School America Joins With HA

Miss Tennessee High School America joins HA to bring awareness for those living with hydrocephalus in the state of Tennessee and across the country.

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Summer camp for special needs kids

Splash Into Summer Fun with Summer Camp

Summer is right around the corner. Where will you child go to summer camp this year? A young adult from our community offers some insight and tips.

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Taurean Nixon

Superbowl Champ to Keynote Hydrocephalus Conference

Mr. Taurean Nixon of the Super Bowl Champion Denver Broncos will serve as the Inspirational Keynote Speaker at the National Conference on Hydrocephalus.

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Seattle Boy Proves to be a Fighter

Tristen Pierce was born with a rare birth defect called rhombencephalosynapsis and has a shunt as part of his treatment plan. Despite numerous challenges, Tristen has proved to be a fighter.

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Living with Anxiety & Hydrocephalus, Part 3

I was asked a question I had never been asked in a job interview, and I thought it was a great question. The question was: “What motivates you?”

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Dallas Hydrocephalus WALK Family

Hawk and Why I WALK

A member of the hydrocephalus community reflects on the birth of his son with hydrocephalus and how it has affected his life.

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National Hydrocephalus Conference

Conference Registration is OPEN!

Registration for our 14th National Conference on Hydrocephalus is OPEN! Join us in Minneapolis, Minnesota, June 16 – 19, 2016.

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10 Reasons to Attend Conference!

Our biennial conference is a cornerstone of our commitment to serving our community. You don’t *need* a reason to attend conference but here are some good ones!

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Head with brain shunt

Term ‘Water Head’ Causes Hydrocephalus Community to Take Notice

NBC’s Saturday Night Live Weekend Update uses ‘water head,’ a forgotten derogatory term describing individuals with hydrocephalus.

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