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.
Alexandra Hochstetler was one of our ten Young Investigator Travel Award winners at the 2018 HACONNECT. This past weekend, she presented her work at the Europhysiology Conference held in London, United Kingdom!
The IIHS gathered data from more than 20 hospitals around the world, compared the effectiveness of shunts versus endoscopic third ventriculostomies (ETVs). This study started in 2005 and these are the five year outcomes.
Hydrocephalus Awareness Month (HAM), held every year in September, presents a powerful opportunity to make our collective voices heard and spread awareness about hydrocephalus!
I spent six days and five nights as a counselor at Camp Head Strong, the very first camp for kids with hydrocephalus. This was the second year of the camp, and judging by everyone’s excitement, I think it was the most successful camp of all!
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!
A few months ago, I noticed that my balance was deteriorating so I mentioned it to my GP at my annual physical. He immediately ordered a CT scan and more Physical Therapy.
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.
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.
For one night in Los Angeles, 700 people got to hear the hilarious antics of Tracy Morgan and several other comedians while raising awareness and funds for the Hydrocephalus Association’s research, support and education programs.
Is an ETV an option after shunt failure? A recent review of 15 studies reported on the effectiveness of endoscopic third ventriculostomy (ETV) after shunt failure in children. Dr. Jenna Koschnitzky, National Director of Research Programs, summarizes the findings.
Dr. Thomas Beez and Dr. Hans-Jakob Steiger from the Heinrich-Heine-University in Düsseldorf, Germany have developed a new health care quality metric for shunt surgeries.
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.
The Hydrocephalus Association’s annual Vision Dinner highlights the advances in research that aims to prevent or minimize the development of hydrocephalus after a brain bleed.
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.
There are two common treatment options available for infants that suffer from Aqueductal stenosis: implantation of a shunt or an endoscopic third ventriculostomy
The Boozle Bears were fun to help make, and I hope they help children understand their condition, as well as raise money for the research I will one day be conducting!
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
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.
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.
The HCRN is fortunate to have a team of hard working, experienced coordinators who are responsible for study start up, running the study, and wrapping things up once a study ends.
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
When it comes to treating balance issues that attend Parkinson’s and other brain and balance disorders such as hydrocephalus and aging, there’s only so much medication can do.
“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.”
By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward!
The Hydrocephalus Association is pleased to announce the funding of three hydrocephalus researchers through the HA Network for Discovery Science (HANDS), Innovator Award.
Imagine having a neurological condition that most people have never heard of. Jamie Wright is on a mission to educate others about hydrocephalus.