HA Updates
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!
Half a Million Dollars Secured for Hydrocephalus Research
In 2015, HA supported Dr. Michael Piper with a $50,000 Innovator Award to study how ependymal cells develop. We are happy to report that this preliminary work recently resulted in Dr. Piper winning a $500,000 grant from the National Health and Medical Research Council of Australia.
Balance Therapy Tips for NPH Patients
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.
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.
Stanley White: From Aerospace Engineer to NPH Advocate
87-year-old retiree dedicates much of his time to raising awareness about NPH, particularly among medical providers.
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.
Unable to join HACONNECT in person? Attend virtually!
We hope you can join us in person at our 15th National Conference on Hydrocephalus: HA CONNECT. But, if you are not able to be in Orange County, this year we will LIVE STREAM and record a select number of our conference sessions.
Tracy Morgan Joined By Hollywood Actors and TV/Movie Execs for “In Stitches: A Night of Laughs”
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.
Conference Hotel SOLD OUT! New Hotel Announced.
Due to the great number of conference attendees already registered for HA CONNECT this year, hotel rooms at the conference hotel are now completely sold out.
Melissa Kopolow McCall Shared Hydrocephalus Patient Perspective on Capitol Hill
McCall shared the challenges her family has faced throughout her daughter’s journey with hydrocephalus at the 9th Annual Medical Imaging Technology Showcase.
Congressional Action on ADA Legislation
43 brave Senators have stood up against legislative efforts to weaken the Americans with Disabilities Act, and we hope those impacted by hydrocephalus will take a moment to thank them for their efforts.
Help us honor #MomFighters this Mother’s Day!
All moms are heroes but mothers of children with hydrocephalus are #momfighters. These moms fight every day to ensure their child gets the life-saving care and support they need to live successful, healthy lives.
Choice of Treatment could Alter Risk of Hydrocephalus After a Subarachnoid Hemorrhage
Hydrocephalus research is conducted all over the world. A recent study sheds light on the risk of developing shunted hydrocephalus after a specific type of brain bleed.