OUR CAUSES VIEW ALL
-
Parents
Dealing with your child’s hydrocephalus diagnosis can be overwhelming. It’s common to have countless questions that range from learning more about what hydrocephalus is to what one can expect a child’s experience to be across the life spectrum.
$0 Donated -
Teens and Young Adults
If you’re a teen or young adult affected by hydrocephalus, we want you to know that you are not alone. Browse our teen and young adult pages to learn about resources to help you. This is YOUR place for information and empowerment.
$0 Donated -
Adults and Caregivers
A hydrocephalus diagnosis is overwhelming, whether you’re a recently diagnosed adult, someone who’s been living with the condition for many years, or a friend or family member. Here you will find information enabling you to have more control of your life.
$0 Donated -
NPH and Caregivers
A normal pressure hydrocephalus (NPH) diagnosis is often confusing, complex, scary and frustrating. For those living with NPH and their caregivers, staying informed about the condition is essential to managing care.
$0 Donated -
Community Network
It’s important to know that you’re not alone as you deal with hydrocephalus. The Hydrocephalus Association’s Community Network provides localized support, education and empowerment through community.
$0 Donated -
Helpline: Free One-on-One Support
Our support staff shares knowledge that comes from personal experience with hydrocephalus and from talking with people who live with the condition. We are here for you by phone and email. We also provide programs and support services to connect you with peers, volunteers and medical professionals.
$0 Donated
BLOG VIEW ALL
-
Child with X-Linked Hydrocephalus Defies the Odds
February 26, 2021Imagine being told that your newborn child may never eat on his own. That’s what happened to Madeline Hopkins and her husband just a few days after their son was born when they learned he had a rare disease known as L1 Syndrome or X-Linked Hydrocephalus.
Posted In: HA Updates -
Technology Update: Neurallys developing Bluetooth enabled ICP monitor
February 17, 2021French startup Neurallys is developing an implantable intracranial pressure (ICP) monitor for hydrocephalus. The device continuously measures, records and sends ICP data to a patient’s smartphone via a Bluetooth connection.
Posted In: HA Updates -
Michigan Writer Pens Children’s Books Inspired by HydroWarrior
February 11, 2021After seeing the way his friend’s son Josh bravely dealt with his hydrocephalus, Joseph Gray was inspired to write two children’s books featuring the adventures and abilities of children. He hopes the books will raise awareness about hydrocephalus and foster acceptance of all kids.
Posted In: HA Updates -
2020 Innovator Award Series: Get to Know Dr. Stavros Taraviras
February 8, 2021Learn about Dr. Stavros Taraviras, one of four scientists who received a Hydrocephalus Association 2020 Innovator Award. Dr. Taraviras is working to turn scar tissue back into ependymal cells as a novel therapeutic strategy for hydrocephalus.
Posted In: HA Updates -
The Hydrocephalus Scoop on Capitol Hill December 2020
December 17, 2020October and November have been a super busy time for all three branches of government (Executive, Legislative and Judicial). Here’s our latest summary of what’s been happening on Capitol Hill.
Posted In: HA Updates -
The Use of Lumboperitoneal Shunts in iNPH Patients
December 15, 2020In the United States, the standard treatment for idiopathic Normal Pressure Hydrocephalus (iNPH) patients is a ventriculoperitoneal shunt (VPS). But a new study explores the effectiveness of lumboperitoneal shunts (LPS), which have also been shown to improve iNPH symptoms and are widely used in Japan.
Posted In: HA Updates -
Diana Gray Named Chair of National Health Council Board
December 8, 2020Diana Gray, HA President and CEO, was named Chairperson of the National Health Council (NHC) Board of Directors for 2021. She was elected to the role at the NHC’s annual membership meeting this week.
Posted In: HA Updates -
Changing Treatments: Converting from a Shunt to an ETV for the Treatment of Hydrocephalus
December 7, 2020A recent study published in Neurosurgery looked at the success rate of converting from a shunt to an endoscopic third ventriculostomy (ETV) in pediatric and young adult patients. The study, with lead author Dr. David S. Hersh, retrospectively reviewed patient data from three children’s hospitals in the United States.
Posted In: HA Updates -
Rhaeos CEO Shares Details About Wearable FlowSense Device
December 7, 2020Earlier this year, Rhaeos won MedTech Innovator’s 2020 Global Competition. In a recent conversation with Rhaeos CEO Anna Lisa Somera, Somera discussed the significance of the award and how FlowSense can improve the way hydrocephalus is managed.
Posted In: HA Updates -
Giving Tuesday 2020
December 7, 2020We can’t thank you enough for donating to the Hydrocephalus Association for GivingTuesday. It’s truly an honor to have your support!
Posted In: HA Updates
EVENTS VIEW ALL
-
FREE Webinar: College Planning for Students Who Learn Differently
This presentation will focus on what colleges look for in students, the six essential skills for college success, the types of accommodations and services that are available on campus, paths to independence, and how to find the “right fit.”
-
FREE Webinar: New Research on Preventing Hydrocephalus after a Brain Bleed
This presentation will focus on research on the prevention of posthemorrhagic hydrocephalus of prematurity (PHH) and the prevention of hydrocephalus after a traumatic brain injury (TBI).
-
FREE Webinar: Moving from Pediatric to Adult Care: Are you Ready?
This presentation will focus on transitioning from pediatric to adult healthcare.