Let’s Make Some Noise for Hydrocephalus Awareness Month!

August 13, 2021
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September is Hydrocephalus Awareness Month (HAM), our chance to shine a light on hydrocephalus and how it impacts our community! Help us make a big impact by posting about HAM…

Announcement About Anuncia ReFlowTM System Mini

June 15, 2021

Earlier this year, Anuncia Inc., a medical device company focused on the development of treatment devices for hydrocephalus and other cerebrospinal fluid (CSF) disorders, announced that the ReFlowTM System Mini received the U.S Food and Drug Administration (FDA) Breakthrough Device Designation. The ReFlowTM System Mini is the next generation version of the commercial ReFlowTM Ventricular System.

In the NICU: Preparing Families for Life with Hydrocephalus

May 25, 2021

A recent study explored how neonatal intensive care units (NICUs) can better prepare families that receive a diagnosis of posthemorrhagic hydrocephalus  of prematurity (PHHP).

Hydrocephalus and Independence

May 4, 2021

By Madeleine Darowiche, HA Volunteer So, you’re considering living on your own for the first time, but you have hydrocephalus and question if it’s possible? You’ve come to the right…

How to Reconnect and Trust your Body

April 29, 2021

In this blog, Bethany Holmes, Certified Integrative Health Coach, and Reiki Practitioner discusses how to reconnect, trust, love, and heal your body after trauma.

A Mystery Disease: One Woman’s Struggle to Get Diagnosed with NPH

April 12, 2021

Merlin Bott woke up one morning in October 2013 with a severe case of vertigo. It quickly got worse and soon, she became so dehydrated that she had to be hospitalized. Finally after 29 harrowing days in the hospital, she was told she needed brain surgery.

Innovator Award Series: Get to Know Dr. Aditya S. Pandey

April 5, 2021
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In this installment of our Meet the Innovator Award Grantees Blog Series, we interviewed Dr. Aditya S. Pandey, one of four scientists who received a 2020 Innovator Award. Dr. Pandey’s team is testing the use of acetazolamide (Diamox) directly into the ventricles to determine if it can prevent hydrocephalus.

The Hydrocephalus Scoop on Capitol Hill March 2021

April 1, 2021

The cherry blossoms are blooming in Washington, DC, which is a sure sign that the new Congressional session is well underway. Let’s get you up to speed on what’s been happening on hydrocephalus policy issues so far.

My Thoughts for Teachers

March 3, 2021

Sarah Kell, an adult living with hydrocephalus, offers thoughts for teachers when working with a child with hydrocephalus.

Child with X-Linked Hydrocephalus Defies the Odds

February 26, 2021

Imagine being told that your newborn child may never eat on his own. That’s what happened to Madeline Hopkins and her fiance Sean 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.

Technology Update: Neurallys developing Bluetooth enabled ICP monitor

February 17, 2021

French 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.

Michigan Writer Pens Children’s Books Inspired by HydroWarrior

February 11, 2021

After 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.