Complications of ETV

The Importance of a Support System

October 19, 2021
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Living with hydrocephalus can feel overwhelming at times. That’s why building a strong support system is so important. Our team of trained professionals is here to help! Our staff will listen to your concerns and connect you with helpful resources.

The Hydrocephalus Scoop on Capitol Hill – Sept/Oct 2021

October 4, 2021
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The Hydrocephalus Association has been busy protecting hydrocephalus-related research dollars in Congress, and working with members Congress to recognize National Hydrocephalus Awareness Month.

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
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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
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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
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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
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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
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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
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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
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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.