hydrocephalus
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.
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.
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.
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.
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!
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.
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!
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).
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.
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.
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!
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.
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.
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.
Medical Experts and Patients Educate New Jersey Families About Brain Disorder That Affects Over 1 Million Americans
Dementia, gait disturbance, and incontinence. Typically, when older adults have these symptoms, they’re told they have diseases like Alzheimer’s, Parkinson’s or a host of other illnesses, when in many cases they are suffering from a treatable condition called Normal Pressure Hydrocephalus (NPH). Join the Hydrocephalus Association at its first Hydrocephalus Education Day in Neptune, NJ on Nov. 9th, where medical experts and patients will discuss NPH symptoms, and share information about other forms of hydrocephalus.
Announcing our 2019 Hydrocephalus Association Scholarship Recipients!
The Hydrocephalus Association (HA) is pleased and honored to announce our 2019 Hydrocephalus Association Scholarship Recipients.
DC Families Unite to Find a Cure for Life-Threatening Brain Disorder
Will take part in the DC WALK to End Hydrocephalus Sept. 28 at the Lincoln Memorial What if brain surgery was the only way to stay alive? For children like Khoy Blasi-Diggs, Jr, it is. Khoy has hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Hoping […]
Two Sons, Two Brain Disorders, 18 Brain Surgeries
Houston family hopes to raise money for a cure at the WALK to End Hydrocephalus on Sept. 21 at Buffalo Bayou Park Brothers Ryder and Kai Bruen not only share the same birthday, they also share the same brain disorder. The 13-year-old twins have hydrocephalus, a life-threatening neurological condition that can only be treated with […]
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.
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.
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.
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.
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.
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.
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.
Valentine’s Day Digital Tag Game!
This Valentine’s Day get ready for the biggest game of digital tag you’ve ever played!
Does the size of an Endoscopic Third Ventriculostomy (ETV) hole increase over time?
This study is the first to evaluate the size of the ETV hole using MR imaging over a period of time. This research is important because it shows us how useful MR imaging can be to neurosurgeons who want to evaluate an ETV.
HA-Funded Researchers Awarded $2.3 Million Grant from the Department of Defense
HA-funded researchers were awarded funding through the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP) to study acquired hydrocephalus, with a particular focus on hydrocephalus that develops after a brain injury.
WALKs to End Hydrocephalus Help Raise Nearly $2 Million
The 2018 WALK to End Hydrocephalus season is in the books! And what a year it was. Thanks to the Hydrocephalus Association’s wonderful volunteers, 43 WALKS were held across the U.S., with more than 14,000 participants representing over 1,200 teams.
How a Changed Congress Could Impact Hydrocephalus
On Tuesday, November 6th, voters went to the polls and made some significant changes to the U.S. Congress. Due to the bi-partisan nature of policy issues impacting the hydrocephalus community, this outcome represents both opportunities and challenges moving forward.
Honor Your Preemie HydroHero on World Prematurity Day
Nov. 17 is World Prematurity Day, which highlights the health challenges premature babies face at birth and beyond. For us at HA, World Prematurity Day is a way to draw attention to Posthemorrhagic Hydrocephalus (PHH), one of the most insidious forms of hydrocephalus.
Hydrocephalus research presented at the international Europhysiology Conference
Alexandra Hochstetler was one of our ten Young Investigator Travel Award winners at the 2018 HACONNECT. This past weekend, she presented her work at the Europhysiology Conference held in London, United Kingdom!
Shunt versus ETV: Five year outcomes from the International Infant Hydrocephalus Study (IIHS)
The IIHS gathered data from more than 20 hospitals around the world, compared the effectiveness of shunts versus endoscopic third ventriculostomies (ETVs). This study started in 2005 and these are the five year outcomes.
Make Your Voice Heard During Hydrocephalus Awareness Month!
Hydrocephalus Awareness Month (HAM), held every year in September, presents a powerful opportunity to make our collective voices heard and spread awareness about hydrocephalus!
My Incredible Experience at Camp Head Strong
I spent six days and five nights as a counselor at Camp Head Strong, the very first camp for kids with hydrocephalus. This was the second year of the camp, and judging by everyone’s excitement, I think it was the most successful camp of all!
Choosing The Best College For You
Some of us with Hydrocephalus have the added stress of learning differences. These factors come into play when we start thinking about college.
Congress Preserves Program Essential to Quality Hydrocephalus Research
Thanks to the efforts of a range of advocates, including the hydrocephalus community, Congress has preserved the Congressionally Directed Medical Research Program (CDMRP).
Stem Cell Mutations Linked to Hydrocephalus
Could a genetic mutation explain why some people with congenital hydrocephalus experience neurological problems? That’s what a new study by Dr. Kristopher Kahle of Yale University suggests. The study was recently published in the journal, Neuron, and highlighted by Yale News. Read the full article
Top Ten Takeaways from the 2018 HA Conference
I attended HACONNECT and hoped it would be an educational experience and it was, but it was also much more. Here are my top ten takeaways.
Three-Year-Old Dean “The Machine” Becomes Team Captain of First Hydrocephalus Endurance Racecar!
HydroDad Bennett Wilson wanted a creative and fun way to raise awareness and funds for hydrocephalus research & programs, so he built a Hydrocephalus Racecar! Learn more about his racecar journey and how you can help support the Hydrocephalus Racing Team at their first race!