HA Updates

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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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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Announcing our 2020 Hydrocephalus Association Scholarship Recipients!

Were pleased to announce the 2020 Hydrocephalus Association Scholarship Award Recipients. HA’s scholarship program was established in 1994 to provide financial assistance to capable and promising teens, young adults, and adults who live with the ongoing challenges and complexities of hydrocephalus.

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The Hydrocephalus Scoop on Capitol Hill for September-October 2020

In addition to celebrating Hydrocephalus Awareness month, the Hydrocephalus Association has been tracking the ins and outs of what’s happening on Capitol Hill. Read our latest advocacy update!

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A Poem for HydroWarriors

Amanda Harrinauth is a poet, author, life coach and Special Olympics athlete living with hydrocephalus, vision impairment and autism. For Hydrocephalus Awareness Month, she wrote a poem to inspire others. 

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HA Welcomes New National Director of Development

Linda Riley has joined the Hydrocephalus Association as the new National Director of Development. Linda brings more than 20 years of fundraising experience to this position.

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Study Explores Quality of Life of Children with Hydrocephalus and Caregivers

A new study published in the Journal of Neurosurgery: Pediatrics assessed quality of life and mental wellbeing of both children with hydrocephalus and their caregivers.

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Let’s Get Loud for Hydrocephalus Awareness Month!

September is Hydrocephalus Awareness Month – our chance to bring national attention to the over one million Americans living with hydrocephalus. Let’s make some noise on social media by showing what YOU would do to end hydrocephalus. 

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The Hydrocephalus Scoop on Capital Hill for August 2020

Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.

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Sophia Gigante: Finding Strength from Within

Born with hydrocephalus and later developing hypotonia, Sophia Gigante was tired of hearing doctors tell her no. But at age 16, a trip to the gym changed everything and she soon realized there wasn’t much she couldn’t do.

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Get to Know Dr. Engin Deniz: HA 2019 Innovator Award Grantee

For our Meet the Innovator Award Grantees Blog Series, we interviewed Dr. Engin Deniz, one of four scientists who received a 2019 Innovator Award. Through his research, he hopes to determine how cilia, small hair like structures that move CSF, contribute to post-traumatic hydrocephalus.

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Dorothy Sorlie: A Teacher’s Unbreakable Spirit

Dorothy Sorlie spent months suffering with debilitating symptoms until finally being diagnosed with NPH. Now she educates others about this little-known condition.

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Staying out of the Hospital: Comparing Hydrocephalus Treatments in the Pediatric Population

A new Hydrocephalus Clinical Research Network (HCRN) study examined differences in the number of subsequent surgeries a child with hydrocephalus had to undergo after their initial treatment. The study compared a shunt, an endoscopic third ventriculostomy (ETV), and an ETV with chorioid plexus cauterization (ETV-CPC).

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Over 2,000 People Attend HA’s First-Ever Virtual Conference

For the first time ever, our National Conference on Hydrocephalus, HA CONNECT, was held entirely online. A record 2,000 people from over 60 countries participated in our virtual sessions and connected through our HA CONNECT mobile app!

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Brainy Camps and Camp Headstrong are Back with a Twist This Year!

Camp Head Strong, the summer camp for children and teens living with hydrocephalus, will be going virtual for the first time ever!

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A Conversation with Aesculap About New M.blue Valve

On May 15th, Aesculap Inc., in partnership with MIETHKE, released a new valve for hydrocephalus patients called the M.blue valve. This week, we spoke with them to learn more about their new valve and what it means for people living with hydrocephalus.

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Join Our National Movement to End Hydrocephalus

This year we’re turning our WALK to End Hydrocephalus into a national movement that starts NOW wherever you are! That’s right – whether you go for family walks around your neighborhood, a short jog, or hulahoop in your backyard, help us raise awareness and funds for a cure while exercising your body and mind!

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Individuals Diagnosed with Idiopathic Normal Pressure Hydrocephalus Show Improved Quality of Life after Shunting

A new study found that shunting improved quality of life for people living with Idiopathic Normal Pressure Hydrocephalus (iNPH).

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A Tribute to Dr. James T. Goodrich

The Hydrocephalus Association and many in the hydrocephalus community were deeply saddened to learn of the passing of Dr. James Goodrich on March 30, 2020. Dr. Goodrich was a pediatric neurosurgeon and longtime friend and supporter of HA.

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HA CONNECT 2020 Goes Virtual

After much discussion with our conference program planning committee and the leadership of the Hydrocephalus Association (HA), we have decided to change our 16th National Conference on Hydrocephalus, HA CONNECT, from an in-person event to a virtual experience.

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New Resources to Help You Stay Resilient

Our hydrocephalus community KNOWS resiliency! To help you stay resilient throughout the COVID-19 crisis, we launched a new series on social media called #WeAreResilient.

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Get to Know Dr. Joel Geerling: HA 2019 Innovator Award Grantee

In the 3rd installment of our Meet the Innovator Awardees Blog Series, we interviewed Dr. Joel Geerling, one of four scientists who received our 2019 Innovator Award, and Maggie Tish, who works in Dr. Geerling’s lab. They delve deeper into their fascinating research on Normal Pressure Hydrocephalus (NPH).

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Update and Information for the Hydrocephalus Community Regarding COVID-19

Many in our community have asked if hydrocephalus is considered a risk factor for severe disease with COVID-19. As a follow up to our previous post, Dr. Michael A. Williams, Chair of HA’s Medical Advisory Board, has reviewed published medical research and found that hydrocephalus has not been mentioned as a specific risk factor in adults or children.

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UPDATE: Hydrocephalus Association Statement on COVID-19

Several people in the hydrocephalus community have expressed their concern about the novel coronavirus. After consulting with our Medical Advisory Board, read our statement and recommendations.

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Get to Know Dr. Brandon Miller: HA 2019 Innovator Award Grantee

In the second installment of our Meet the Innovator Awardees Blog Series, we interviewed Dr. Brandon A. Miller, one of four scientists who received an Innovator Award grant.

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New Paper Addresses Challenges of Health Care Transition for Youth with Hydrocephalus

A new paper published in World Neurosurgery explores the challenges faced by youth during the transition process and the steps necessary to ensure young adults with hydrocephalus receive the longitudinal care they need to lead healthy and supported lives.

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Scout O’Donnell: Using Fashion to Help Others Heal

After being diagnosed with hydrocephalus at 18, Scout O’Donnell found a way to combine her two passions — fashion and finding a cure for hydrocephalus.

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Get to Know Dr. Bernadette Holdener: HA 2019 Innovator Award Grantee

In our first installment of our Meet the Innovator Awardees Blog Series, we interview Dr. Bernadette Holdener, one of four scientists who received a Hydrocephalus Association 2019 Innovator Award.

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Add Your Voice to the My PaTH Story Booth Project

Add your hydrocephalus story to the MyPaTH Story Booth Project to help researchers better understand the hydrocephalus patient experience.

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Four Scientists Awarded HA Grants to Deepen Our Understanding about Hydrocephalus

There is a lot we do not know about how hydrocephalus develops and how to best treat the condition across our many communities. Our 2019 Innovator Award recipients are looking to change that.

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Study Finds CERTAS™ Plus Programmable Valve Safe from Everyday Magnets

Can everyday magnets affect programmable shunt valves? A new study found that the CERTAS™ Plus Programmable Valve resisted interference from common household magnets, even at close proximity.

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An Easy Way to Shop on AmazonSmile!

 Your Amazon mobile app is not able to support HA when your purchase from your phone. But we have a great hack for you…

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