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
, ,

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.

2020 Innovator Award Series: Get to Know Dr. Stavros Taraviras

February 8, 2021
,

Learn 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.

Balancing Work, School, and Hydrocephalus

January 28, 2021

In this blog, Carly shares the important takeaways about what it means to balance parts of your life along with hydrocephalus.

Thriving with NPH – Dorothy Sorlie’s Story

January 25, 2021
,

Dorothy’s goal is to help others find an accurate NPH diagnosis and treatment to avoid what she, and so many, have experienced.