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

By Natalia Martinez Duncan / 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.

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

By Natalia Martinez Duncan / 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.

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The Hydrocephalus Scoop on Capitol Hill March 2021

By Natalia Martinez Duncan / 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.

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My Thoughts for Teachers

By JennBechard / March 3, 2021

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

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Child with X-Linked Hydrocephalus Defies the Odds

By Natalia Martinez Duncan / 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.

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Technology Update: Neurallys developing Bluetooth enabled ICP monitor

By Natalia Martinez Duncan / 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.

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Michigan Writer Pens Children’s Books Inspired by HydroWarrior

By Natalia Martinez Duncan / 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.

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

By Natalia Martinez Duncan / 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.

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Balancing Work, School, and Hydrocephalus

By JennBechard / January 28, 2021

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

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Thriving with NPH – Dorothy Sorlie’s Story

By JennBechard / 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.

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Thriving with NPH – Gary Chaffee’s Story

By JennBechard / January 21, 2021

Gary has been living with NPH for over 40 years. He hopes the information he offers is helpful to someone that is just learning about the condition.

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Thriving with NPH – Trish Bogucki’s Story

By JennBechard / January 20, 2021

Trish was diagnosed with NPH and had shunt surgery. Thanks to that and several kinds of therapy, Trish is now back to doing what she loves.

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The Benefits of Informing Your Child’s School about Their Hydrocephalus

By JennBechard / January 20, 2021

Informing your child’s school about hydrocephalus is important. Read these tips to ensure that you’re prepared when talking to the school about your child’s condition.

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Get on the Right Career Track

By JennBechard / January 20, 2021

When choosing a career, college major, or educational program, it’s important to take the time to explore your options.

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Making Your Work Environment Work For You 

By JennBechard / January 19, 2021

Individuals with hydrocephalus can succeed at work despite their condition. Learn how to make your work environment work for you.

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The Hydrocephalus Scoop on Capitol Hill December 2020

By Natalia Martinez Duncan / December 17, 2020

October 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.

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The Use of Lumboperitoneal Shunts in iNPH Patients

By Natalia Martinez Duncan / December 15, 2020

In 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.

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Diana Gray Named Chair of National Health Council Board

By Natalia Martinez Duncan / December 8, 2020

Diana 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.

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Giving Tuesday 2020

By Ines Schlegel / December 7, 2020

We can’t thank you enough for donating to the Hydrocephalus Association for GivingTuesday. It’s truly an honor to have your support!

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Rhaeos CEO Shares Details About Wearable FlowSense Device

By Natalia Martinez Duncan / December 7, 2020

Earlier 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.

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