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.
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.
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.
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.
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.
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.
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.
Dorothy Sorlie spent months suffering with debilitating symptoms until finally being diagnosed with NPH. Now she educates others about this little-known condition.
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).
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!
Camp Head Strong, the summer camp for children and teens living with hydrocephalus, will be going virtual for the first time ever!
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.
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!
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).
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.
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.
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.
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).
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.
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.
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.
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.
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.
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.
Add your hydrocephalus story to the MyPaTH Story Booth Project to help researchers better understand the hydrocephalus patient experience.
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.
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.
Your Amazon mobile app is not able to support HA when your purchase from your phone. But we have a great hack for you…
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!
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!
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.
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.
Over 15,000 individuals and families participated in a WALK to End Hydrocephalus this year, raising over $2 million to support HA’s mission!
Believe it or not, the impeachment debate isn’t the only thing happening in Washington, DC! Here’s a quick rundown.
Giving Tuesday is on December 3rd this year! We hope you’ll stand with us this year and support the Hydrocephalus Association!
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.
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.
The Hydrocephalus Association (HA) is pleased and honored to announce our 2019 Hydrocephalus Association Scholarship Recipients.
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 […]
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.