hydrocephalus
The Hydrocephalus Scoop on Capitol Hill
Believe it or not, the impeachment debate isn’t the only thing happening in Washington, DC! Here’s a quick rundown.
Caucus Briefing Educates Members of Congress About Hydrocephalus
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.
Medical Experts and Patients Educate New Jersey Families About Brain Disorder That Affects Over 1 Million Americans
Dementia, gait disturbance, and incontinence. Typically, when older adults have these symptoms, they’re told they have diseases like Alzheimer’s, Parkinson’s or a host of other illnesses, when in many cases they are suffering from a treatable condition called Normal Pressure Hydrocephalus (NPH). Join the Hydrocephalus Association at its first Hydrocephalus Education Day in Neptune, NJ on Nov. 9th, where medical experts and patients will discuss NPH symptoms, and share information about other forms of hydrocephalus.
Announcing our 2019 Hydrocephalus Association Scholarship Recipients!
The Hydrocephalus Association (HA) is pleased and honored to announce our 2019 Hydrocephalus Association Scholarship Recipients.
DC Families Unite to Find a Cure for Life-Threatening Brain Disorder
Will take part in the DC WALK to End Hydrocephalus Sept. 28 at the Lincoln Memorial What if brain surgery was the only way to stay alive? For children like Khoy Blasi-Diggs, Jr, it is. Khoy has hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Hoping […]
Two Sons, Two Brain Disorders, 18 Brain Surgeries
Houston family hopes to raise money for a cure at the WALK to End Hydrocephalus on Sept. 21 at Buffalo Bayou Park Brothers Ryder and Kai Bruen not only share the same birthday, they also share the same brain disorder. The 13-year-old twins have hydrocephalus, a life-threatening neurological condition that can only be treated with […]
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.
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.
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!
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.
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.
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.
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.
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!
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!
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).
Stem Cell Mutations Linked to Hydrocephalus
Could a genetic mutation explain why some people with congenital hydrocephalus experience neurological problems? That’s what a new study by Dr. Kristopher Kahle of Yale University suggests. The study was recently published in the journal, Neuron, and highlighted by Yale News. Read the full article
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.
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!
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.
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.
Those Battling Hydrocephalus Come Forward to Share Their Stories
When UFC fighter Ray Borg shared how hard it was dealing with his son’s hydrocephalus, away from the rest of his family in New Mexico, it brought together an entire community in Colorado dealing with this disease. Families from across Colorado started writing about their stories online and shared them with 9News Denver. They not only […]
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.
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.
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!
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.
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.