Child 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 husband 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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Ralph Kistler Research Internship

Duration: June – August 2021 Location: Remote or Local (Bethesda, MD) Work hours: M-F, 9:00 – 5:00 pm ET Stipend: $2,500 Application deadline: March 26, 2021 Ralph Kistler Research Internship The Hydrocephalus Association seeks applicants for the Ralph Kistler Research Internship. The internship is for undergraduate college students who are interested in the sciences, public […]

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Technology 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.

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Michigan 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.

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2020 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.

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The 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.

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The 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.

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Diana 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.

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Changing Treatments: Converting from a Shunt to an ETV for the Treatment of Hydrocephalus

A recent study published in Neurosurgery looked at the success rate of converting from a shunt to an endoscopic third ventriculostomy (ETV) in pediatric and young adult patients. The study, with lead author Dr. David S. Hersh, retrospectively reviewed patient data from three children’s hospitals in the United States.

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Rhaeos 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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Giving 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!

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Local Mom on a Mission to Find a Cure for Son’s Brain Disorder

Jacob Heston was just four weeks old when he was diagnosed with hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Now at 4 years old, Jacob has endured six brain surgeries to treat his condition. That’s why his mom Jodi hopes to raise much-needed funds for […]

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