HA Updates

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

HA COVID-19 Update March 15, 2020 An issue of great concern to our members is whether 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 the HA Medical Advisory Board, has reviewed published medical research that addresses such risks factors […]

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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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Advocacy Wins for the Hydrocephalus Community

While impeachment still occupies the headlines, it’s not the only thing that happened this past December in Washington, DC. Amidst all the end-of-year chaos, Congress handed the hydrocephalus community a number of big wins!

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High School Student Educates Others about Hydrocephalus

Mauryce Thomas organized an event in Mobile, AL to educate his community about hydrocephalus. The event raised awareness and $1,320 to support HA’s mission!

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New Ask the Expert Video Series for Adults Living with Hydrocephalus

Check out our latest Ask the Expert Video Series developed specifically for adults living with hydrocephalus. The series answers some of the most common questions we receive to our support line.

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James Forrest Vedder Hydrocephalus Research Challenge

The challenge is made possible through the generosity of Ms. Leslys Vedder, in tribute to her late husband, James Forrest Vedder, PhD, a scholar, archaeologist and physicist.

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HA WALKs Help Raise Over $2 Million for Key Programs

Over 15,000 individuals and families participated in a WALK to End Hydrocephalus this year, raising over $2 million to support HA’s mission!

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The Hydrocephalus Scoop on Capitol Hill

Believe it or not, the impeachment debate isn’t the only thing happening in Washington, DC! Here’s a quick rundown.

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Changing Lives This Giving Tuesday

Giving Tuesday is on December 3rd this year! We hope you’ll stand with us this year and support the Hydrocephalus Association!

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St. Louis Event Celebrates 10th Anniversary of HA’s Research Initiative

Families and researchers from across the country came together on Nov. 3 to celebrate the 10th Anniversary of HA’s Research Initiative. The event, held in St. Louis, MO, highlighted the successes of our research investments and honored the trailblazers who started it all.

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Caucus Briefing Educates Members of Congress About Hydrocephalus

Over 60 people attended the Hydrocephalus Caucus Briefing on 10/17. The briefing, hosted by the Hydrocephalus Association and PHF, explored how hydrocephalus impacts patients & how Congress can help.

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Hydrocephalus Association Scholarships

Announcing our 2019 Hydrocephalus Association Scholarship Recipients!

The Hydrocephalus Association (HA) is pleased and honored to announce our 2019 Hydrocephalus Association Scholarship Recipients.

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Hydrocephalus Action Network

URGENT: Contact your Member of Congress

We need your help getting members of Congress and their staff to a Congressional Hydrocephalus Caucus briefing on October 17th. Please take a moment to call & e-mail their offices to ask them to attend. You can learn more about the briefing by clicking here. This shouldn’t take more than 10 minutes and is very […]

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HydroWarrior Makes His Car Racing Dreams a Reality

Mark Dingman has been a NASCAR fan for as long as he can remember. But he never thought he would ever get to drive a race car. That all changed when he discovered the SimPossible Racing League.

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Sevi: A Story of Hope and Brotherly Love

When Sevi was first diagnosed with hydrocephalus, Tiana and Pete Chavez remember feeling terrified. But their fear quickly turned into a desire to help other children in need.

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Hydro Mom Organizes Successful Golf Fundraiser for HA

On July 20, golfers in South Florida came together for an important cause – to raise funds for a cure for hydrocephalus.

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The Hydrocephalus Scoop on Capitol Hill

Hydrocephalus-related policy issues have been on the move in Congress. We thought we’d give you a quick rundown on what’s going on and how it impacts our community.

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HA Volunteer Educates Senior Citizens About NPH

NPH continues to be relatively unknown among the general public and even in the medical community. In April, Trish Bogucki, a longtime HA volunteer, led a presentation on NPH and cognitive therapy for senior citizens in Midland Park, NJ.

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Technology Update: Moving Towards a Self-Sensing Shunt

We recently submitted a letter of support for Senseer’s grant application to the National Science Foundation to develop their “smart shunt”. Learn about this device and what it could mean for patients.

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Wyatt: Meeting Adversity with Joy

Wyatt Foster was born with Spina Bifida and hydrocephalus and has already endured six surgeries before turning 3. Despite that, Wyatt brings joy to everyone he meets and pushes himself to achieve his milestones.

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Get To Know Image Outfitters: A Company That Gives Back

Get to know Image Outfitters, a promotional products company. Through their iShare program, they donate up to 10% of sales to the Hydrocephalus Association!

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New Clinical Trial Aims to Determine Effectiveness of Shunting for iNPH Patients

Patients diagnosed with idiopathic Normal Pressure Hydrocephalus (iNPH) are typically treated by having a shunt placed surgically. A new clinical trial will determine whether or not shunts are an effective form of treatment for iNPH patients.

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Endoscopic Third Ventriculostomy

ETV-CPC for the treatment of infants with hydrocephalus: Predicting Success

The Hydrocephalus Clinical Research Network (HCRN) conducted a study to determine which babies under two years old with hydrocephalus have the best chance of success with an ETV-CPC procedure. In her blog, Dr. Jenna Koschnitzky, National Director of Research Programs, explains why the findings of this study are important when determining if a baby under two years old should receive a shunt or undergo the ETV-CPC procedure.

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Two Friends Run 200 Mile Race to Find a Cure for Hydrocephalus

How far would you run to raise awareness and funds for hydrocephalus research? Brett Bauer and buddy Matt Campbell will run 200 miles!

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Finding Life’s Purpose Through Hydrocephalus

James “JT” Thompson developed hydrocephalus as a teen. Little did he know that his experience would help him find his purpose in life.

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Conan O’Brien Headlines Comedy Fundraiser for HA

The Hydrocephalus Association’s mission to find a cure and improve lives got a major boost on April 11 when comedian Conan O’Brien headlined “In Stitches: A Night of Laughs” comedy fundraiser. The sold out show raised $300,000 for hydrocephalus research and key programs.

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Surviving College with the Ups and Downs of Hydrocephalus

College is an exciting time but can be challenging when you’re living with hydrocephalus. Here are some tips to survive college while managing the ups and downs of hydrocephalus.

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Cathy Cartwright Calls on Neuroscience Nurses to Play Active Role in Transitioning Youth to Adult Care

Neuroscience nurse Cathy Cartwright addressed her peers at the American Association of Neuroscience Nurses (AANN)’s Annual Meeting to encourage them to get more involved in helping youth transition from pediatric to adult care.

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Hiking for a Cure! An Adventure Seeker Takes on the Appalachian Trail

Willow Bolton decided to hike the Appalachian Trail to raise awareness and funds for hydrocephalus. Read about what inspired her journey.

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Extracurricular Activities and Hobbies: The Positive Effect They Have for Individuals with Disabilities

People with disabilities can benefit greatly by taking part in hobbies and extracurricular activities. Here are some tips to help you identify the activity that’s right for you.

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You spoke! We wrote!

In October 2017, 82 individuals responded to a question we posed on social media about how hydrocephalus impacts their daily life. Researchers at the University of Pittsburgh Medical Center analyzed their responses in a new paper.

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