HA Updates
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?
My Incredible Experience at Camp Head Strong
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!
Choosing The Best College For You
Some of us with Hydrocephalus have the added stress of learning differences. These factors come into play when we start thinking about college.
Congress Preserves Program Essential to Quality Hydrocephalus Research
Thanks to the efforts of a range of advocates, including the hydrocephalus community, Congress has preserved the Congressionally Directed Medical Research Program (CDMRP).
Post-surgical Depression
You are on the road to recovery after yet another surgery but suddenly you find yourself unable to focus. One minute you are sitting at your computer working and the next thing you know you are thinking back to being in the hospital and suddenly you are overwhelmed by emotion.
Is there a connection between apathy and gait improvement in patients with Normal Pressure Hydrocephalus (NPH)?
Idiopathic NPH (iNPH) is a disorder commonly seen in older adults. The three common symptoms seen in adults with iNPH include: gait disorder (difficulty walking), inability to control urination, and behavioral disturbances.
Top Ten Takeaways from the 2018 HA Conference
I attended HACONNECT and hoped it would be an educational experience and it was, but it was also much more. Here are my top ten takeaways.
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!
FREE WEBINAR: New Results on the Genetic Causes of Congenital Hydrocephalus
Please join the Hydrocephalus Association and Dr. Kristopher Kahle, Assistant Professor of Neurosurgery and Pediatrics at Yale School of Medicine, to learn about the new results from his research on genetic causes of congenital (developmental) hydrocephalus.
Join our Birthday Challenge!
Earlier this summer, our intern, Emily Lawrence, who was born with hydrocephalus, launched a birthday fundraiser on Facebook and in one month, she was able to raise $750 for HA! Inspired by her passion and dedication, we decided to launch the Birthday Challenge!
Three-Year-Old Dean “The Machine” Becomes Team Captain of First Hydrocephalus Endurance Racecar!
HydroDad Bennett Wilson wanted a creative and fun way to raise awareness and funds for hydrocephalus research & programs, so he built a Hydrocephalus Racecar! Learn more about his racecar journey and how you can help support the Hydrocephalus Racing Team at their first race!