Research
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.
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.
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).
$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.
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!
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.
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.
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.
CSF Shunt Entry Site Trial
The CSF Shunt Entry Site Trial has reached the 75% mark in patient enrollment, that is 385 patients enrolled!
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.
Tax Overhaul may Affect Charitable Giving and Non-Profits
Congressional efforts to overhaul the tax code could have major implications for charitable giving and non-profit budgets and could lead to reductions in research, advocacy, outreach, and other services.
Preliminary results from the International Infant Hydrocephalus Study
There are two common treatment options available for infants that suffer from Aqueductal stenosis: implantation of a shunt or an endoscopic third ventriculostomy
Reflections From “Boozle Bear Sew-a-Thon” Event Participant
The Boozle Bears were fun to help make, and I hope they help children understand their condition, as well as raise money for the research I will one day be conducting!
From Patient to Progress: New insights into preventing shunt blockages
While shunt implantation is a typical treatment option for people with hydrocephalus, there have been surprisingly few advances to decrease shunt failure rates since the 1950s
New Theories in Posthemorrhagic Hydrocephalus
A recent study expands these results to posthemorrhagic hydrocephalus in premature infants. Please take a moment to read more about this important research.
New Theories in Fetal-Onset Hydrocephalus
Current research suggests that a cascade of events involving cell junctions, the VZ, and the SVZ may be the cause of fetal-onset hydrocephalus and its accompanying neurological disorders.
The Power of Storytelling
Storytelling can be a powerful and influential advocacy tool in getting people to understand the breadth and depth of impact hydrocephalus has on individuals and families.Every person afflicted with Hydrocephalus has a story to tell.
Meet the HCRN Clinical Research Coordinators
The HCRN is fortunate to have a team of hard working, experienced coordinators who are responsible for study start up, running the study, and wrapping things up once a study ends.
The Challenge of Diagnosing Shunt Dysfunction
Researchers aim to improve the way that physicians identify problems with a shunt implant
A Look at New Shunt Technology
Biomedical engineers test a sensor that could help predict when a shunt revision is needed.
2017 Rally For Medical Research
We are excited to invite YOU to join the HA staff to represent the hydrocephalus community at the 2017 Rally For Medical Research.
New Tool Detects Pressure Non-invasively
Non-invasive tool may be instrumental in evaluating elevated ICP – a symptom of hydrocephalus and shunt malfunction.
New Insights into Normal Pressure Hydrocephalus
A recently published study attempts to shed light on the long term outcomes of untreated iNPH by examining mortality rates, risk of dementia, and symptom progression in individuals with ventricular enlargement.
PT Tips for NPH Patients
By the time Trish was diagnosed with NPH and had shunt surgery, she had lost her ability to walk unaided, so her neurosurgeon gave her a prescription for physical therapy.
New Study Seeks to Improve Outcomes After a Brain Bleed
Germinal matrix hemorrhage (GMH) is a brain bleed that occurs in approximately 3.5 per 1000 live births and remains a leading cause of mortality and lifelong morbidity in premature infants.
The Importance of Environmental Enrichment
Learn more about a recent study that suggests stimulating environments can improve cognitive outcomes for children living with hydrocephalus.
Ciliopathies and their Role in Congenital Hydrocephalus
Mutations in a number of genes coding for cilia structure, function, and regulation, have been associated with congenital hydrocephalus; these are called ciliopathies.
The Hydrocephalus Association wants to THANK YOU!
By filling out our online surveys, participating in the clinical research networks, and making donations, we are moving hydrocephalus research forward!
Over 500 Adult Hydrocephalus Patients Enrolled in Registry
HA is proud to fund the AHCRN as they move research from bench to bedside to find new treatments, preventions and cures for adults living with hydrocephalus and NPH.
2016 Innovator Award Announcement
The Hydrocephalus Association is pleased to announce the funding of three hydrocephalus researchers through the HA Network for Discovery Science (HANDS), Innovator Award.
Student Spotlight: Jamie Wright Advocates For Hydrocephalus Awareness
Imagine having a neurological condition that most people have never heard of. Jamie Wright is on a mission to educate others about hydrocephalus.
This #GivingTuesday was a HUGE success because of YOU!
Because of you and our generous donors that provided matching funds we were able to exceed our goal!
So Many Reasons To Be Grateful
Olivia Maccoux shares her story and leads this year’s holiday drive to support the critical research work of the Hydrocephalus Association.
Risk Factors For Posthemorrhagic Hydrocephalus
Learn about how Dr. Hannah Tully is uncovering risk and protective factors associated with the development of PHH, and the results of a large retrospective study she recently presented.
2016 Member Impact Report
I hope you take great pride in all that we continue to accomplish with your support.
Vision Dinner Aims to Accelerate Hydrocephalus Research
The Third Annual Vision Dinner successfully raised $500K to launch the Hydrocephalus Association Network for Discovery Science (HANDS).
Annual Vision Dinner to Provide Funds to Find a Cure for Hydrocephalus
On October 15, the Hydrocephalus Association will hold its annual Vision Dinner to raise crucial funds to kick-start a breakthrough initiative aimed at curing hydrocephalus.