HA Updates
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.
Sleep Away Camp for Kids with Hydrocephalus!
Camp Head Strong offers children and teens with hydrocephalus (ages 10-17) six days and five nights of summer fun, education, and social connections.
Hockey Player with Hydrocephalus Wins Gold Medal in PyeongChang!
Adam Page, living with hydrocephalus and spina bifida, is a member of the USA Hockey Team that won the Gold Medal in the 2018 Paralympic Winter Games in PyeongChang!
Is an ETV an Option After Shunt Failure?
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.
Countdown to Conference: Tips on making it affordable!
The 15th National Conference on Hydrocephalus, HACONNECT, takes place June 28-30, 2018 in Orange County, California. Join us! Here are tips to help make it affordable.
It’s Time to #StopTheCap on PT, OT and Speech Language Services
There is a $2,010 cap on PT, OT, and/or Speech therapy services for patients on Medicare. After they hit $2,010, Medicare will no longer cover the therapy costs and many patients cannot continue with their needed therapies. We can #StopTheCap.
ETV-CPC for the treatment of infants with hydrocephalus
To determine if ETV-CPC provided a benefit compared to ETV alone or placement of a shunt, the HCRN decided to conduct a study which was recently published in the Journal of Neurosurgery: Pediatrics.
CSF Shunt Entry Site Trial
The CSF Shunt Entry Site Trial has reached the 75% mark in patient enrollment, that is 385 patients enrolled!
Announcing National Conference Financial Aid
The Hydrocephalus Association is pleased to announce a financial aid program for the 15th National Conference on Hydrocephalus which will be held in Orange County, California June 28-30, 2018.
Conference Program Available!
The Hydrocephalus Association staff and the program planning committee are happy to announce the release of our conference agenda for the 15th National Conference on Hydrocephalus, HACONNECT!
Conference Registration is OPEN!
Registration for our 15th National Conference on Hydrocephalus is OPEN! Join us in Orange County, California, June 28 – 30, 2018.
Tools To Help Patients With Hydrocephalus Make Informed Decisions About Their Health Care.
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.
A Writer’s World
Blair Patrick Schuyler talks about the challenges and elation of writing his first book, “Adolescence Interrupted”, and on growing up with hydrocephalus..
2018 Scholarship Cycle OPEN!
We are now accepting applications for our 2018 Hydrocephalus Association Scholarship Program.
Department of Defense Funds Two Research Studies on Hydrocephalus
Department of Defense funding of two hydrocephalus researchers reflects the success of the Hydrocephalus Association’s Research and Advocacy Initiatives.
Letter from Longeviti Neuro Solutions
Longeviti Neuro Solutions would like to thank the incredible number of people who participated in our recently distributed survey.