A Mystery Disease: One Woman’s Struggle to Get Diagnosed with NPH
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.
Read MoreInnovator Award Series: Get to Know Dr. Aditya S. Pandey
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.
Read MoreThe Hydrocephalus Scoop on Capitol Hill March 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.
Read MoreMy Thoughts for Teachers
Sarah Kell, an adult living with hydrocephalus, offers thoughts for teachers when working with a child with hydrocephalus.
Read MoreChild with X-Linked Hydrocephalus Defies the Odds
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.
Read MoreTechnology Update: Neurallys developing Bluetooth enabled ICP monitor
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.
Read MoreMichigan Writer Pens Children’s Books Inspired by HydroWarrior
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.
Read More2020 Innovator Award Series: Get to Know Dr. Stavros Taraviras
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.
Read MoreBalancing Work, School, and Hydrocephalus
In this blog, Carly shares the important takeaways about what it means to balance parts of your life along with hydrocephalus.
Read MoreThriving with NPH – Dorothy Sorlie’s Story
Dorothy’s goal is to help others find an accurate NPH diagnosis and treatment to avoid what she, and so many, have experienced.
Read MoreThriving with NPH – Gary Chaffee’s Story
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.
Read MoreThriving with NPH – Trish Bogucki’s Story
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.
Read MoreThe Benefits of Informing Your Child’s School about Their Hydrocephalus
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.
Read MoreGet on the Right Career Track
When choosing a career, college major, or educational program, it’s important to take the time to explore your options.
Read MoreMaking Your Work Environment Work For You
Individuals with hydrocephalus can succeed at work despite their condition. Learn how to make your work environment work for you.
Read MoreThe Hydrocephalus Scoop on Capitol Hill December 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.
Read MoreThe Use of Lumboperitoneal Shunts in iNPH Patients
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.
Read MoreDiana Gray Named Chair of National Health Council Board
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.
Read MoreGiving Tuesday 2020
We can’t thank you enough for donating to the Hydrocephalus Association for GivingTuesday. It’s truly an honor to have your support!
Read MoreRhaeos CEO Shares Details About Wearable FlowSense Device
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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