HA Updates
Sevi: A Story of Hope and Brotherly Love
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.
Hydro Mom Organizes Successful Golf Fundraiser for HA
On July 20, golfers in South Florida came together for an important cause – to raise funds for a cure for hydrocephalus.
The Hydrocephalus Scoop on Capitol Hill
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.
HA Volunteer Educates Senior Citizens About NPH
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.
Technology Update: Moving Towards a Self-Sensing Shunt
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: Meeting Adversity with Joy
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 Company That Gives Back
Get to know Image Outfitters, a promotional products company. Through their iShare program, they donate up to 10% of sales to the Hydrocephalus Association!
New Clinical Trial Aims to Determine Effectiveness of Shunting for iNPH Patients
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.
ETV-CPC for the treatment of infants with hydrocephalus: Predicting Success
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.
Two Friends Run 200 Mile Race to Find a Cure for Hydrocephalus
How far would you run to raise awareness and funds for hydrocephalus research? Brett Bauer and buddy Matt Campbell will run 200 miles!
Finding Life’s Purpose Through Hydrocephalus
James “JT” Thompson developed hydrocephalus as a teen. Little did he know that his experience would help him find his purpose in life.
Conan O’Brien Headlines Comedy Fundraiser for HA
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.
Surviving College with the Ups and Downs of Hydrocephalus
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.
Hiking for a Cure! An Adventure Seeker Takes on the Appalachian Trail
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.
You spoke! We wrote!
In October 2017, 82 individuals responded to a question we posed on social media about how hydrocephalus impacts their daily life. Researchers at the University of Pittsburgh Medical Center analyzed their responses in a new paper.
Valentine’s Day Digital Tag Game!
This Valentine’s Day get ready for the biggest game of digital tag you’ve ever played!
Three Scientists Awarded HA Grants for Their Bold and Innovative Work
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.
Does the size of an Endoscopic Third Ventriculostomy (ETV) hole increase over time?
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.
Sleep Away Camp for Kids with Hydrocephalus!
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 Awarded $2.3 Million Grant from the Department of Defense
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.
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.
Comprehensive Paper Addressing Transitioning to Adult Care Published in Journal of Neurosurgery
A new paper summarizing the findings from the Hydrocephalus Association’s first-ever Transition Summit was published in the prestigious Journal of Neurosurgery (JNS). The JNS reaches both pediatric and adult providers, all of whom will have crucial roles to play in improving transition.
Eau Claire Woman Shares Story In Hopes of Educating Others
After struggling with a declining interest in activities that she loved, decreasing mobility, and urinary incontinence, Dorothy Sorlie was finally diagnosed with Normal Pressure Hydrocephalus (NPH). A recent article in the Leader-Telegram detailed her journey.
The Subjective Experience of Patients Undergoing Shunt Surgery for Idiopathic NPH
A study from Yale School of Medicine looked at the personal experiences of people diagnosed with idiopathic Normal Pressure Hydrocephalus (iNPH).
How a Changed Congress Could Impact Hydrocephalus
On Tuesday, November 6th, voters went to the polls and made some significant changes to the U.S. Congress. Due to the bi-partisan nature of policy issues impacting the hydrocephalus community, this outcome represents both opportunities and challenges moving forward.
$3 Million Raised for Posthemorrhagic Hydrocephalus!
The 2018 Vision Dinner was held on Friday, Nov. 2 in New York City. Generously underwritten by Craig and Vicki Brown, benefactors of the Hydrocephalus Association, the evening seeks to raise national attention about hydrocephalus and raise funds to advance hydrocephalus research.
Brett Weitz Named New Board Chair!
We’re excited to announce that Brett Weitz, a hydro dad and longtime member of the hydrocephalus community, has been named chair of our Board of Directors.
Honor Your Preemie HydroHero on World Prematurity Day
Nov. 17 is World Prematurity Day, which highlights the health challenges premature babies face at birth and beyond. For us at HA, World Prematurity Day is a way to draw attention to Posthemorrhagic Hydrocephalus (PHH), one of the most insidious forms of hydrocephalus.
HA-Funded Researcher Awarded $1.8M NIH Grant
The Hydrocephalus Association (HA) is funding the best and brightest. Since 2009, HA has spent $7.8 million on our research programs. Our researchers have then gone on to secure over $19 million in additional funding to continue their innovative work.
Our Advocacy Efforts on Capitol Hill Worked!
The budget bill recently signed by President Trumps protects and increases funding for several crucial hydrocephalus-related research programs.
Hydrocephalus Without a Safety Net
I have never known a life without hydrocephalus. For 33 years, that meant I had also never known a life without a shunt.
Announcing the 2018 Discovery Science Award Grantees!
The award allows these scientists to expand their research on posthemorrhagic hydrocephalus (PHH).
Hydrocephalus research presented at the international Europhysiology Conference
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!
Tracking the FY 2019 Spending Bills in Congress
The Hydrocephalus Association joined 35 other patient groups in asking Congress to protect funding for hydrocephalus-related research programs at the Department of Defense (DoD) — and it worked!
Announcing Our 2018 Hydrocephalus Association Scholarship Recipients!
The Hydrocephalus Association (HA) is pleased and honored to announce our 2018 Hydrocephalus Association Scholarship Recipients.
Shunt versus ETV: Five year outcomes from the International Infant Hydrocephalus Study (IIHS)
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.
Make Your Voice Heard During Hydrocephalus Awareness Month!
Hydrocephalus Awareness Month (HAM), held every year in September, presents a powerful opportunity to make our collective voices heard and spread awareness about hydrocephalus!
Risk Factors for Ventriculoperitoneal (VP) Shunt Failure in Children and Adults
What specific factors are associated with VP shunt failure within 30 days of its placement? Do secondary shunts fail more often than primary (or first) shunts?