After being diagnosed with hydrocephalus at 18, Scout O’Donnell found a way to combine her two passions — fashion and finding a cure for hydrocephalus.
In our first installment of our Meet the Innovator Awardees Blog Series, we interview Dr. Bernadette Holdener, one of four scientists who received a Hydrocephalus Association 2019 Innovator Award.
Add your hydrocephalus story to the MyPaTH Story Booth Project to help researchers better understand the hydrocephalus patient experience.
There is a lot we do not know about how hydrocephalus develops and how to best treat the condition across our many communities. Our 2019 Innovator Award recipients are looking to change that.
Can everyday magnets affect programmable shunt valves? A new study found that the CERTAS™ Plus Programmable Valve resisted interference from common household magnets, even at close proximity.
Your Amazon mobile app is not able to support HA when your purchase from your phone. But we have a great hack for you…
While impeachment still occupies the headlines, it’s not the only thing that happened this past December in Washington, DC. Amidst all the end-of-year chaos, Congress handed the hydrocephalus community a number of big wins!
Mauryce Thomas organized an event in Mobile, AL to educate his community about hydrocephalus. The event raised awareness and $1,320 to support HA’s mission!
Check out our latest Ask the Expert Video Series developed specifically for adults living with hydrocephalus. The series answers some of the most common questions we receive to our support line.
The challenge is made possible through the generosity of Ms. Leslys Vedder, in tribute to her late husband, James Forrest Vedder, PhD, a scholar, archaeologist and physicist.
Over 15,000 individuals and families participated in a WALK to End Hydrocephalus this year, raising over $2 million to support HA’s mission!
Believe it or not, the impeachment debate isn’t the only thing happening in Washington, DC! Here’s a quick rundown.
Giving Tuesday is on December 3rd this year! We hope you’ll stand with us this year and support the Hydrocephalus Association!
Families and researchers from across the country came together on Nov. 3 to celebrate the 10th Anniversary of HA’s Research Initiative. The event, held in St. Louis, MO, highlighted the successes of our research investments and honored the trailblazers who started it all.
Over 60 people attended the Hydrocephalus Caucus Briefing on 10/17. The briefing, hosted by the Hydrocephalus Association and PHF, explored how hydrocephalus impacts patients & how Congress can help.
The Hydrocephalus Association (HA) is pleased and honored to announce our 2019 Hydrocephalus Association Scholarship Recipients.
We need your help getting members of Congress and their staff to a Congressional Hydrocephalus Caucus briefing on October 17th. Please take a moment to call & e-mail their offices to ask them to attend. You can learn more about the briefing by clicking here. This shouldn’t take more than 10 minutes and is very […]
Mark Dingman has been a NASCAR fan for as long as he can remember. But he never thought he would ever get to drive a race car. That all changed when he discovered the SimPossible Racing League.
When Sevi was first diagnosed with hydrocephalus, Tiana and Pete Chavez remember feeling terrified. But their fear quickly turned into a desire to help other children in need.
On July 20, golfers in South Florida came together for an important cause – to raise funds for a cure for hydrocephalus.
Hydrocephalus-related policy issues have been on the move in Congress. We thought we’d give you a quick rundown on what’s going on and how it impacts our community.
NPH continues to be relatively unknown among the general public and even in the medical community. In April, Trish Bogucki, a longtime HA volunteer, led a presentation on NPH and cognitive therapy for senior citizens in Midland Park, NJ.
We recently submitted a letter of support for Senseer’s grant application to the National Science Foundation to develop their “smart shunt”. Learn about this device and what it could mean for patients.
Wyatt Foster was born with Spina Bifida and hydrocephalus and has already endured six surgeries before turning 3. Despite that, Wyatt brings joy to everyone he meets and pushes himself to achieve his milestones.
Get to know Image Outfitters, a promotional products company. Through their iShare program, they donate up to 10% of sales to the Hydrocephalus Association!
Patients diagnosed with idiopathic Normal Pressure Hydrocephalus (iNPH) are typically treated by having a shunt placed surgically. A new clinical trial will determine whether or not shunts are an effective form of treatment for iNPH patients.
The Hydrocephalus Clinical Research Network (HCRN) conducted a study to determine which babies under two years old with hydrocephalus have the best chance of success with an ETV-CPC procedure. In her blog, Dr. Jenna Koschnitzky, National Director of Research Programs, explains why the findings of this study are important when determining if a baby under two years old should receive a shunt or undergo the ETV-CPC procedure.
How far would you run to raise awareness and funds for hydrocephalus research? Brett Bauer and buddy Matt Campbell will run 200 miles!
James “JT” Thompson developed hydrocephalus as a teen. Little did he know that his experience would help him find his purpose in life.
The Hydrocephalus Association’s mission to find a cure and improve lives got a major boost on April 11 when comedian Conan O’Brien headlined “In Stitches: A Night of Laughs” comedy fundraiser. The sold out show raised $300,000 for hydrocephalus research and key programs.
College is an exciting time but can be challenging when you’re living with hydrocephalus. Here are some tips to survive college while managing the ups and downs of hydrocephalus.
Cathy Cartwright Calls on Neuroscience Nurses to Play Active Role in Transitioning Youth to Adult Care
Neuroscience nurse Cathy Cartwright addressed her peers at the American Association of Neuroscience Nurses (AANN)’s Annual Meeting to encourage them to get more involved in helping youth transition from pediatric to adult care.
Willow Bolton decided to hike the Appalachian Trail to raise awareness and funds for hydrocephalus. Read about what inspired her journey.
Extracurricular Activities and Hobbies: The Positive Effect They Have for Individuals with Disabilities
People with disabilities can benefit greatly by taking part in hobbies and extracurricular activities. Here are some tips to help you identify the activity that’s right for you.
This Valentine’s Day get ready for the biggest game of digital tag you’ve ever played!
What if you could prevent or stop the development of hydrocephalus after a brain bleed or develop a shunt that doesn’t get clogged? That’s what the 2018 HA Innovator Award grantees are hoping to do through their research projects.
This study is the first to evaluate the size of the ETV hole using MR imaging over a period of time. This research is important because it shows us how useful MR imaging can be to neurosurgeons who want to evaluate an ETV.
Camp Head Strong offers children and teens with hydrocephalus (ages 10-17) five days and four nights of summer fun, education, and social connections!
HA-funded researchers were awarded funding through the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP) to study acquired hydrocephalus, with a particular focus on hydrocephalus that develops after a brain injury.