brain surgery
WALKs to End Hydrocephalus Help Raise Nearly $2 Million
The 2018 WALK to End Hydrocephalus season is in the books! And what a year it was. Thanks to the Hydrocephalus Association’s wonderful volunteers, 43 WALKS were held across the U.S., with more than 14,000 participants representing over 1,200 teams.
Watch Recorded Sessions from HA CONNECT 2018!
Miss the 15th National Conference on Hydrocephalus, HA CONNECT? Recordings of the 19 live streamed sessions are now available! Register as a virtual attendee for $20 to access the 19 recordings!
Join us as we say #NOMOREBS!
Brain surgery should not be the only treatment option for the over 1 million Americans living with hydrocephalus. Join the Hydrocephalus Association is standing up to say #NOMOREBS – #NOMOREBRAINSURGERIES – with our national awareness campaign.
New views on Postinfectious Hydrocephalus
A recent study published in Nature, Dr. Chay Kuo, out of Duke University, discovered a mechanism that may lead to the development of Postinfectious Hydrocephalus.
CSF Shunt Entry Site Trial
The CSF Shunt Entry Site Trial has reached the 75% mark in patient enrollment, that is 385 patients enrolled!
Conference Registration is OPEN!
Registration for our 15th National Conference on Hydrocephalus is OPEN! Join us in Orange County, California, June 28 – 30, 2018.
A Fundraising Story
It is interesting to see how many families truly are affected by hydrocephalus. It’s something a lot of people have never heard of… yet through social media, we connected with 4 different families all dealing with the same thing.
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.
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
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.
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.
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
A Look at New Shunt Technology
Biomedical engineers test a sensor that could help predict when a shunt revision is needed.
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.”
The Importance of Environmental Enrichment
Learn more about a recent study that suggests stimulating environments can improve cognitive outcomes for children living with hydrocephalus.
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.
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.
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.
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.
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.
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.
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.
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.
The 2017 Hydrocephalus Association Scholarship Cycle is OPEN!
We are now accepting applications for our 2017 Hydrocephalus Association Scholarship Program.
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.
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.
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.
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.
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.
Announcing Our 2016 Hydrocephalus Association Scholarship Recipients!
The Hydrocephalus Association (HA) is pleased and honored to announce our 2016 Hydrocephalus Association Scholarship Recipients.
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
Living Hydro: One Family’s Journey
Our Charlotte Hydrocephalus WALK Chair shares her daughter’s journey with hydrocephalus.
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.
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.
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.
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.
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.
2016 Member Impact Report
I hope you take great pride in all that we continue to accomplish with your support.
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.
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.