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Understanding Anxiety, Depression, and Mental Health in Hydrocephalus
Anxiety and depression are common in people living with chronic conditions. Hydrocephalus is no exception. The link between hydrocephalus and mental health is influenced by a combination physical, emotional, and social factors. Explore how hydrocephalus...
Understanding a Shuntogram (Shunt Patency Study)
A shuntogram, or shunt patency study, checks if a shunt is working properly by tracking fluid flow to identify blockages or leaks.
Understanding External Ventricular Drains (EVDs) in Hydrocephalus Management
External Ventricular Drains (EVDs) are crucial for managing hydrocephalus, providing temporary relief and helping treat infections or test shunt effectiveness. Understanding their use can help patients and families feel more confident.
Understanding Intracranial Pressure (ICP) Monitors in Hydrocephalus: When and Why They’re Used
Intracranial pressure (ICP) monitors are essential for managing hydrocephalus, offering real-time insights into intracranial pressure. They help diagnose symptoms, evaluate shunt performance, and guide treatment decisions, empowering patients and families to actively participate in care.
Guide to Managing Chronic Pain, Headaches, and Hydrocephalus
Chronic pain and headaches can impact every aspect of life, but with the right strategies, relief is possible. This guide offers practical tips for managing symptoms, including tracking with HydroAssist®, staying hydrated, prioritizing sleep, and...
How to Explain Hydrocephalus to Your Teachers and Friends
Hydrocephalus can be tricky to explain, but keeping it simple helps: Share what’s important for others to know, like when you might need a break, and remember—it’s your story to tell, your way.
Looking Back at Key Accomplishments in 2024
2024 was a year full of legislative accomplishments for the Hydrocephalus Association and the broader hydrocephalus community. Our successes could not have been achieved without the hard work of advocates from across the country. Partners...
U.S. House Foreign Affairs Committee Holds Hearing on the Challenges Affecting Global Hydrocephalus Patients
The House Foreign Affairs Subcommittee’s November 20th hearing discussed global brain health challenges, focusing on hydrocephalus in developing countries. Experts, including Dr. Benjamin Warf of NeuroKids, highlighted the need for better care and training to...
Navigating Relationships with Hydrocephalus: Building Strong Connections
Navigating relationships with hydrocephalus requires patience, open communication, and mutual support. With understanding and balance, strong connections can thrive beyond the challenges.
Intimacy and Hydrocephalus: Strengthening Bonds Together
Learn how hydrocephalus affects intimacy and find ways to strengthen emotional and physical connections in romantic relationships.
Maximizing Your Doctor Appointments: Tips, Tools, and Insights
Doctor appointments can be overwhelming, but preparation is the key to making them count. This article offers practical tips, trusted resources, and insights from those living with hydrocephalus to help you take charge of your...
The Exclusive Hydrocephalus Scoop on the Hill | Key Updates for November 2024
Washington, D.C. is buzzing as Congress pushes key legislation and the Hydrocephalus Association partners with advocates to drive priorities forward. With government funding set to expire on December 20th, a short-term resolution is likely. The...
The Power of a Second Opinion: Advocating for Your Health
Even though second opinions are a common and accepted practice in medicine, many people feel uncomfortable asking for them.
Join a Clinical Trial
Help further hydrocephalus research by participating in clinical research trials. Your input is valuable in our quest to find a cure for hydrocephalus.
Announcing the 2024 Hydrocephalus Association Innovator Award Recipients
The Innovator Awards fund groundbreaking projects advancing hydrocephalus research, driving innovation, and improving outcomes for those impacted worldwide.
Breaking Myths About Hydrocephalus: What’s Fact and What’s Fiction?
Hydrocephalus is often misunderstood, with myths overshadowing the realities of this invisible condition. This blog breaks down common misconceptions, highlights the facts, and sheds light on the challenges faced by those living with hydrocephalus, proving...
Understanding Cerebral/Cortical Visual Impairment (CVI) and Hydrocephalus: How Vision Can Be Affected
Cerebral Visual Impairment (CVI) affects how the brain processes visual information. This article highlights the link between CVI and hydrocephalus, its impact on vision, and ways to support those affected.
Strategies for Coping with Memory Issues and Forgetfulness
Memory challenges can impact daily life in many ways, whether they’re related to managing medical conditions like hydrocephalus or are part of the natural aging process. Here are some practical strategies, tools, and resources to...
What Hydrocephalus Patients Should Know for Medicare Open Enrollment
As Medicare beneficiaries navigate through the open enrollment period, it is crucial for them to understand the surplus of 2025 changes as they choose a new Medicare insurance plan. The Medicare Open Enrollment Period began...
What to Expect With ETV Surgery
The best way to prepare for endoscopic third ventriculostomy (ETV) surgery is to learn as much as you can about the procedure, your medical team, and what to expect post-surgery. The thought of having to...
ETV and ETV with CPC
ETV Surgery Versus a Shunt A shunt system is a commonly used method to treat hydrocephalus and involves draining excess cerebrospinal fluid (CSF) from the brain into other parts of the body where it can...
ETV Complications
Complications of Endoscopic Third Ventriculostomy Hydrocephalus can be treated by undergoing a surgical procedure called endoscopic third ventriculostomy (ETV) or endoscopic third ventriculostomy with choroid plexus cauterization (ETV/CPC). ETV and ETV/CPC can be alternative treatments...
Get the Exclusive Hydrocephalus Scoop on Capitol Hill for October 2024
As healthcare advocates race to secure passage of critical bills before the end of the 118th Congress, the Hydrocephalus Association (HA) is joining forces on Capitol Hill, advocating for vital legislation to support Medicare coverage...
Scientists Uncover Emerging Insights on Fluid Systems in the Brain at the iNPH Research Workshop
In October 2024, the Hydrocephalus Association and RSRI hosted a workshop with over 70 experts to discuss cerebrospinal fluid (CSF) movement, a key factor in understanding idiopathic normal pressure hydrocephalus (iNPH).
About Hydrocephalus
What is Hydrocephalus? Hydrocephalus is a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF) within the cavities (ventricles) of the brain. Hydrocephalus happens when there is an imbalance between the amount...
Normal Pressure Hydrocephalus (NPH)
What is Normal Pressure Hydrocephalus (NPH)? Normal pressure hydrocephalus (NPH) is when there is a build-up of cerebrospinal fluid (CSF) in an area in the center of the brain called (ventricles). This causes the ventricles...
Hydrocephalus in Adults
Hydrocephalus occurs when there is a buildup of fluid, known as cerebrospinal fluid (CSF), in cavities called ventricles inside the brain. Anyone at any age can be diagnosed with hydrocephalus. Hydrocephalus in young and middle-aged...
Hydrocephalus in Pregnancy
Why do Babies Develop Hydrocephalus? Hydrocephalus that is present at birth is referred to as congenital hydrocephalus. Congenital hydrocephalus is caused by a complex interaction of genetic and environmental factors during fetal development. The most...
Hydrocephalus in Infants and Children
In simplest terms, hydrocephalus is extra fluid in the brain. The fluid, cerebrospinal fluid (CSF), is found within spaces (cavities) in the brain which are called ventricles. The main purpose of CSF is to cushion...
Advocates Participate in Rally for Medical Research To Educate Lawmakers on Hydrocephalus Research
The Hydrocephalus Association recently brought advocates to Washington, D.C. for the Rally for Medical Research Advocacy Day on Capitol Hill. This event united a diverse group of stakeholders, including doctors, scientists, patients, and caregivers, to...
HA Innovator Awardees Garner Multi-Million Dollar NIH Grants for Hydrocephalus Research
Hydrocephalus Association (HA) is thrilled to highlight the continued success of two of our Innovator Award recipients, Dr. Brandon Miller and Dr. Sheng Chih (Peter) Jin who have recently secured substantial multi-million dollar grants from...
Resources For Understanding Hydrocephalus
Resources For UnderstandingHydrocephalus About Hydrocephalus The Hydrocephalus Association is your trusted source for information at every stage of life. We offer resources that provide life-changing support to people living with hydrocephalus and their loved ones....
Discover the Types and Causes of Hydrocephalus
Types and Causes Hydrocephalus is a complex, chronic condition that can develop for a variety of reasons, sometimes as part of another condition. Hydrocephalus is a complex, chronic condition that can develop for a variety...
RAISE Resilience Program
RAISE The Hydrocephalus Association’s Resilience Program The Hydrocephalus Association RAISE program is a six-module research-informed program intended to help caregivers of children with hydrocephalus build the skills of resilience. It was designed by the University...
Communicating and Non-Communicating Hydrocephalus
Communicating hydrocephalus occurs when the flow of cerebrospinal fluid (CSF) is blocked after it exits the ventricles. Non-communicating hydrocephalus occurs when the flow of CSF is blocked along one of or more of the narrow...
Congenital Hydrocephalus
Congenital hydrocephalus is caused by a complex interaction of genetic and environmental factors during fetal development.
Acquired Hydrocephalus
Acquired hydrocephalus develops after birth as a result of neurological conditions such as head trauma, brain tumor, cyst, brain bleed, or infection.
Cavan, Breccan, and Teagan
Caitlin shares her family’s unique journey of having three children diagnosed with hydrocephalus, beginning with her oldest son, Cavan. Despite being told the condition wasn’t genetic, both of her younger children, Breccan and Teagan, were...
Shunt Systems
What is a Shunt? The most common treatment for hydrocephalus is the surgical placement of a medical device called a shunt that drains the excess fluid from the brain to another part of the body.A...
You or Your Loved One Has Just Been Diagnosed – What’s Next?
Have you or a loved one been newly diagnosed with hydrocephalus? We’re here to help you on this journey!
Resources for Teens and Young Adults with Hydrocephalus
Resources For Teens and Young Adults Living with Hydrocephalus Know You’re Not Alone We are here to help you live your best life. Find essential tools and resources to help you advocate for yourself, make...
Just Like Any Other Beagle: Coloring Book
This coloring book helps children with hydrocephalus understand the condition through the story of Barney Beagle, making learning fun and engaging for families.
Complications of Shunt Systems
Shunt systems save lives and are successful in reducing pressure in the brain for most people. However, like any other long-term medically implanted device, they can malfunction (fail). Complications can arise from various factors, including...
Resources for Adults with Hydrocephalus
Resources For Adults Living with Hydrocephalus Know You’re Not Alone We are here to help you live your best life. Find essential tools and resources to help you advocate for yourself, make informed decisions, and...
Resources for Parents Caring for a Child with Hydrocephalus
Resources For Parents Caring for a Child with Hydrocephalus Know You’re Not Alone We’re here to help your child live their best life. As your child grows, our resources grow with you. Find essential tools...
A Guide for Families
We know a new diagnosis can be overwhelming. Our guide offers essential information on hydrocephalus in children, its diagnosis, treatment options, and supportive programs to help your family cope and thrive.
A Guide for Adults
Our guide offers essential information on hydrocephalus, including supportive programs to help your family navigate this journey with confidence!
Resources for Adults with Normal Pressure Hydrocephalus (NPH)
Resources For Adults Living with Normal Pressure Hydrocephalus (NPH) Know You’re Not Alone We are here to help you live your best life. Find essential tools and resources to help you advocate for yourself, make...
What to Expect with Hydrocephalus Shunt Surgery
The thought of having to undergo brain surgery is frightening and can be physically and emotionally taxing. That’s why it’s important to learn as much as you can about the procedure, get to know the...
Find a Community Network
Find a Community Network It’s important to know that you’re not alone as you deal with hydrocephalus. The Hydrocephalus Association’s Community Networks, also known as support groups, provide localized support, education, and empowerment through the community....
Get the Exclusive Hydrocephalus Scoop on Capitol Hill for September 2024
Stay informed with the latest updates on hydrocephalus advocacy from Capitol Hill as we highlight key legislative efforts and community engagement for September 2024.
Understanding the Choroid Plexus: Function, Location, and Its Role in Hydrocephalus
The choroid plexus produces cerebrospinal fluid (CSF), which cushions the brain and maintains pressure. Located in the brain’s ventricles, it plays a key role in fluid balance. When this balance is disrupted, conditions like hydrocephalus...
Research 101: Generalizability
The concept of Generalizability in research studies is especially important for individuals living with hydrocephalus because there are so many different causes.
Research 101: Brain Development
We are continuing our series on the role of cell junctions and the ventricular zone in the development of hydrocephalus.
Living with Hydrocephalus
Resources For Living with Hydrocephalus We have tools and tips to guide you through every stage in life. For Parents Gain the tools and resources to help you advocate for your child, make informed decisions,...
Get the Hydrocephalus Scoop on Capitol Hill for August 2024
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.
Cerebrospinal Fluid Dynamics Relevant to Hydrocephalus
Cerebrospinal Fluid (CSF) flows through the four ventricles and then flows between the meninges in an area called the subarachnoid space.
Nearly 20 Years of Endurance, Dedication, and Swimming the Unswimmable In the Name of Hydrocephalus Research with Team Hydro
Team Hydro is a group of dedicated volunteers and swimmers helping to raise awareness and funding for advanced research of hydrocephalus.
Finding Our Way with L1CAM
The causes of hydrocephalus are varied, but one with a clear genetic linkage is X-linked hydrocephalus, a genetic disorder that occurs in about 1 of 30,000 births.
Research 101: Junction, Junction, What’s Your Function?
By understanding why and how these disruptions occur, scientists may be able to repair or replace abnormal junctions and prevent or arrest the development of hydrocephalus.
Get the Hydrocephalus Scoop on Capitol Hill for July 2024
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.
Community Research Priorities
Read Study Here Community Research Priorities We listened closely to the needs of our community over the last few years by conducting a formal study using the James Lind Alliance (JLA) methodology that included patients,...
Get Involved in Research
Get Involved In Research Researchers may have the scientific expertise, but they need input from people living with hydrocephalus in order to ask the right questions and develop treatments that will benefit our entire community....
Research We Fund
Research We Fund By connecting basic, translational, and clinical researchers, HA is accelerating hydrocephalus research and working to fulfill our mission. Bench to Bedside The Hydrocephalus Association Research Program is focused on advancing promising avenues...
Join the Hydrocephalus Patient Registry
Share your experiences and help inform critical hydrocephalus research! JOIN HAPPIER! What is HAPPIER? HAPPIER is an online database created for our community to share your experience living with hydrocephalus. By sharing your experience,...
The Clinical Networks
Clinical Networks The HCRN and AHCRN are focused on improving the lives of those living with hydrocephalus. Our Clinical Networks are Making a Difference! The HCRN and AHCRN are focused on improving the lives of...
Department of Defense Awards $5.6 Million Grant to Senseer Health Inc. for Innovative Hydrocephalus Shunt Monitoring Technology
DOD has awarded Senseer Health Inc. $5.6 million to develop an innovative medical monitoring device for individuals living with hydrocephalus. This could be a game-changer for the hydrocephalus community.
Get the Hydrocephalus Scoop on Capitol Hill for June 2024
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.
National Partnership for Pediatric to Adult Care Transition (NPPACT) Hosts First Congressional Event
The Hydrocephalus Association, alongside several other organizations, hosted a Capitol Hill Briefing to address the significant challenges young adults with pediatric-onset conditions face when transitioning to the adult healthcare system, highlighting the urgent need for...
Research 101: The Importance of Sample Size
Having a large number of participants reduces the risk of accidently having extreme, or biased, groups. Let’s find out why.
Patient Engagement: A Key Healthcare Priority
HA staff recently attended the National Health Council’s (NHC) Science of Patient Engagement Symposium. The event, hosted in Washington, D.C., brought together an array of patients and patient organizations to speak on the importance of...
Get the Hydrocephalus Scoop on Capitol Hill for May 2024
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.
Traveling with Hydrocephalus
Your Resource to Traveling with Hydrocephalus Traveling Soon? Whether you are flying, cruising, camping, or driving abroad or within the states, the ability to travel is important to independence, self-esteem, and lifestyle. Individuals living with...
Physicians’ Directory
Find A Doctor To find a specialist, use the search tool below. New specialists are regularly added. DISCLAIMER: We are pleased to provide this resource and want to remind you that the Directory is not...
Research 101: Randomization
Our Research Blog 101 series continues with a look at how randomization works in clinical trials.
Questions for Your Doctor about Hydrocephalus
Questions for Your Doctor about Hydrocephalus All questions are valuable and this is your chance to take charge, so use our suggestions as a starting point. We have compiled lists of questions that we believe...
What to Ask Your Doctor about NPH
Creating and maintaining a good relationship with qualified doctors is vital in overall healthcare planning. We have compiled lists of questions.
What to Ask Your Doctor about Young and Middle-Age Adults with Hydrocephalus
Creating and maintaining a good relationship with qualified doctors is vital in overall healthcare planning. We have compiled lists of questions.
What to Ask Your Doctor about Teens with Hydrocephalus
Creating and maintaining a good relationship with qualified doctors is vital in overall healthcare planning. We have compiled lists of questions.
What to Ask Your Doctor About Infants and Children with Hydrocephalus
Creating and maintaining a good relationship with qualified doctors is vital in overall healthcare planning. We have compiled lists of questions.
Medical History Summary
Fill out this form to keep track of your medical history and other vital information regarding your health. Keep a printed copy always with you.
Advancing Engineering Solutions for Hydrocephalus
Advancing Engineering Solutions for Hydrocephalus As part of its strategic plan, the Hydrocephalus Association’s (HA) research department reached out to experts beyond physicians and scientists to bring bioengineers into their network. The goal is to...
Prenatal FAQ Checklist for Expectant Parents
Receiving an unexpected prenatal diagnosis of hydrocephalus can be difficult to handle. Expectant parents can experience a range of emotions. We’re here for you.
Get the Hydrocephalus Scoop on Capitol Hill for April 2024
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.
Advancing Hydrocephalus Research and Treatment Options: Non-Invasive Therapy Research Workshop
More than 75 experts in hydrocephalus gathered in Cincinnati, OH for the 2024 Research Workshop focused on finding ways to better treat hydrocephalus, aiming to make treatments safer and less invasive.
Hydrocephalus Scoop on Capitol Hill for March 2024
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. (March 2024)
Hydrocephalus Association Congressional Briefing on Capitol Hill
The Hydrocephalus Association recently partnered with the Defense Health Research Consortium (DHRC) to host a research-centered Congressional Briefing on Capitol Hill.
Revolutionary Women in Hydrocephalus Research – Dr. Blazer-Yost
Celebrate Influential Leaders during National Women’s History Month. Dr. Blazer-Yost, scientist and medical researcher is making strides for hydrocephalus.
In Memory of Our Miracle Carla
Carla’s journey began with a revelation that resonated with uncertainty. Carla was diagnosed with congenital hydrocephalus in-utero in the first trimester. Their physician, unfamiliar with delivering babies diagnosed with hydrocephalus, advocated for abortion, citing a...
Hydrocephalus Association Highlights Revolutionary Women in Medical Research
Celebrate Influential Leaders during National Women’s History Month. Dr. Robinson & Dr. Jantzie are both revolutionary women making strides for hydrocephalus
Get the Hydrocephalus Scoop on Capitol Hill for February 2024
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.
Hydrocephalus Association Unites Advocates for 2024 Rare Disease Week
Members from the Hydrocephalus Association Action Network came to Washington, DC, to participate in the Everylife Foundation for Rare Disease’s Rare Disease Week, which took place from February 25-28, 2024.
Neural Tube Defects (NTD)
Learn about the genetics of neural tube defects, which can lead to hydrocephalus.
Research 101: An Explanation of Clinical Trials Design
Dr. Koschnitzky continues our Science Facts blog series with an explanation of the various clinical trial designs we find in hydrocephalus research.
Coping with Hospital Stays
If you have hydrocephalus, the hospital may be a very familiar place. Learn tips and tools on how to cope with hospitalizations.
Get the Hydrocephalus Scoop on Capitol Hill for January 2024
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.
Genetic Mutations and their Role in Congenital Hydrocephalus
Hydrocephalus has been shown to have multiple causes, including numerous genetic origins. Dr. Jenna Koschnitzky explores genetic mutations in a three blog series.
Teacher Resources
Teacher Resources Give your child’s teacher the information they need to support your child on their academic journey. Teachers’ Guides to Hydrocephalus There is no “typical” learning profile that can be assigned to a child...
Medical Alert IDs and Hydrocephalus
Without proper ID of a medical condition, common symptoms can be misdiagnosed and appropriate care could be jeopardized or delayed. Learn more about Medical Alert IDs.
How to be an Assertive Member of the Treatment Team
People with hydrocephalus and their caregivers are highly encouraged to become active, assertive members of their treatment team.
Grey is the new White? Not in the brain!
This Science Facts blog explains the difference between white and grey matter in the brain. Helping you untangle complex concepts and language in research studies!
Research 101: Levels of Evidence in Hydrocephalus Clinical Research Studies
Clinical studies are often reported in the news, but how do you know if the study is strong? Dr. Koschnitzky describes how to interpret the results of a study.
Neurons – a brain superhighway!
This month’s Science Facts blog focuses on the neuron and it’s role in basic brain function. Helping you untangle complex concepts and language in research studies!
Teacher’s Guide: Early Elementary (K-2nd)
Our Teachers’ Guides address common learning challenges faced by many children with hydrocephalus as well as their needs in mainstream classrooms.
Teacher’s Guide: Late Elementary (Grades 3-5)
Our Teachers’ Guides address common learning challenges faced by many children with hydrocephalus as well as their needs in mainstream classrooms.
Teacher’s Guide to Hydrocephalus: High School
Our Teachers’ Guides address common learning challenges faced by many children with hydrocephalus as well as their needs in mainstream classrooms.
Teachers’ Guide: Middle School (6th-8th)
Our Teachers’ Guides address common learning challenges faced by many children with hydrocephalus as well as their needs in mainstream classrooms.
The Hydrocephalus Scoop on Capitol Hill for December 2023
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.
Health Challenges and School
Hydrocephalus, as well as the other medical conditions that can accompany it, can have an impact on a child’s ability to participate fully in school.
Toolkit for Transitioning Medical Care
Working with both pediatric and adult providers, we have developed a tool for you to use to help ensure a smooth transition of care.
Timeline for a Successful Transition to Adult Care
Mapping out a path to taking over your medical care once you are of legal age and/or ready to move away from home will help you have a successful transition into the adult medical world.
Primary Care Needs of Children with Hydrocephalus
Children with hydrocephalus may have life-long special health needs. It’s key that caregivers understand hydrocephalus to provide the right primary healthcare.
Learning Disabilities in Children with Hydrocephalus
Learning disabilities (difficulties) are not uncommon in kids with hydrocephalus. Parents must be prepared to act early to give their child the best chance for success.
Sending your Child to Daycare
Sending off a child to daycare is scary on its own. We have developed a checklist to help you prepare.
Social Skills Development in Children with Hydrocephalus
Some kids with hydrocephalus face difficulty developing their social skills. This article talks about those difficulties and suggests tools for overcoming them.
Dr. Peter Chiarelli Receives the Hydrocephalus Association Cynthia Solomon Resident’s Prize for Noninvasive Shunt Function Assessment Method
The Resident’s prize is awarded each year to the most promising hydrocephalus-related research paper presented by a neurosurgical resident at the Pediatric Section meeting of the AANS/CNS. The prize is designed to encourage young doctors...
Individualized Education Program (IEP)
Guidance for parents so they can learn how to develop and maintain good communication between with school personnel.
The Hydrocephalus Scoop on Capitol Hill for November 2023
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.
Scholarship
Scholarship Program Established in 1994 to provide financial assistance to capable and promising young adults who live with the ongoing challenges and complexities of hydrocephalus. We are proud to offer a total of twelve scholarships...
Bullying and Hydrocephalus
Bullying. We hold on to the 1950s image of the big kid on the playground taunting, name-calling, pushing, and intimidating other children.
Back To School Checklist
It’s that time of the year – back to school time! Here is a checklist that includes a couple of simple tips for starting the school year on the right foot.
Driving and Hydrocephalus
Driving is often seen as a rite of passage into adulthood. However, it’s not uncommon for individuals with hydrocephalus to experience challenges.
Advocate With Us
Advocate With Us The Hydrocephalus Action Network (HAN) is a grassroots network of volunteers “at the ready” who are willing to take action to help the Hydrocephalus Association advocate on behalf of all those affected by hydrocephalus....
Advocacy Strategy
Our Advocacy Strategy Alongside the hydrocephalus community, we advocate for policies, programs and agencies that help advance research into a cure for hydrocephalus and new treatment options, improve the lives of the over 1 million...
Congressional Pediatric and Adult Hydrocephalus Caucus
Congressional Pediatric and Adult Hydrocephalus Caucus The Congressional Pediatric and Adult Hydrocephalus Caucus works to increase awareness of hydrocephalus and the myriad of medical, educational, and social issues faced by the over 1 million Americans...
Transitioning from Pediatric to Adult Care
A major milestone in a young adult living with hydrocephalus is the transition from pediatric to adult medical care. Planning for transition is vital, but this process can be complex and overwhelming. Transitioning from Pediatric...
The Hydrocephalus Scoop on Capitol Hill for October 2023
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.
About Hydrocephalus Video
Our video simplifies and explains what hydrocephalus is, showcases the treatment options, and highlights the key symptoms to look out for in case of complications. Take a minute to watch and expand your understanding like...
The Hydrocephalus Scoop on Capitol Hill for September 2023
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.
Healthy Living: NPH
Healthy Living: NPH Staying healthy, from the inside out, is key to maintaining a good quality of life when living with normal pressure hydrocephalus (NPH). Gain tips and tools to optimize your body and mind...
The Hydrocephalus Scoop on Capitol Hill | August 2023
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.
Post-surgical Depression
There’s one surgical complication that is seldom if ever, mentioned before or after surgery, post-surgical depression. Learn more.
The Remarkable Journey of One of America’s Earliest Shunt Surgeries
In 1957, Julia entered the world as a healthy infant. However, just 19 days old, Julia had one of the first successful shunt surgeries in the United States.
The Hydrocephalus Scoop on Capital Hill for June/July 2023
Right now, Congress has two important tasks as it works to increase the country’s debt limit and also come to agreement on how much money will be spent in next year’s federal budget. Here’s the...
Anuncia Medical, Inc., Announces Published Data with Clinical Outcomes Using the ReFlow™ Ventricular System In-Line with Hydrocephalus Shunts
Anuncia Medical, Inc., a company advancing innovations for cerebrospinal fluid (CSF) management systems and neurocritical care haspublished an article in the journal Pediatric Neurosurgery reporting the use of the ReFlow™ Ventricular System with Hydrocephalus shunts...
Study Finds ShuntCheck is an Effective Aid for Emergency Room Doctors
Study Finds ShuntCheck is an effective aid for emergency room doctors in determining the need for surgical intervention in a possible shunt failure. The most common treatment for hydrocephalus is the surgical placement of a...
Find a WALK Near You
HYDROCEPHALUS ASSOCIATION WALK To EndHydrocephalus Goal $1,900,000 0 Help us find a cure for hydrocephalus by participating in a WALK to End Hydrocephalus near you! Every year, over 8,500 people participate in a WALK to...
The Hydrocephalus Scoop on Capital Hill for May 2023
Right now, Congress has two important tasks as it works to increase the country’s debt limit and also come to agreement on how much money will be spent in next year’s federal budget. Here’s the...
Living With NPH Part 2: Tips for Living With NPH
Frank Salamone shares tips for living with normal pressure hydrocephalus (NPH).
Living With NPH Part 1: Trying to Make Peace With a “New Normal”
Frank Salamone, L.C.S.W. is living with NPH and shares his story.
Dr. Stanley White, Living with NPH, Receives President’s Lifetime Achievement Award
Dr. Stanley White will receive the President’s Lifetime Achievement Award on April 28 at the Providence Mission Hospital Annual Awards Luncheon. Stanley has had NPH since 1986 and received a ventriculoarterial shunt at UCLA in...
Relationships and Hydrocephalus
Relationships and Hydrocephalus Share Navigating relationships can be difficult – even more so when complicated by hydrocephalus, headaches and other complications. An area that is often neglected is how hydrocephalus affects the most important aspects...
Employment and Hydrocephalus
Employment and Hydrocephalus Share Many adults diagnosed with hydrocephalus lead full lives with proper management of the condition. People diagnosed with hydrocephalus in childhood often go on to find jobs and people diagnosed in adulthood...
Announcing the Hydrocepahlus Association’s 2022 Innovator Award Recipients
An unprecedented 10 Innovator Awards go out to scientists for their exciting research. Despite our limited understanding of the causes of hydrocephalus and the most effective ways to treat it in different communities, the...
What I Know Now: Tips to Prepare for Shunt Surgery
If you are an adult with NPH heading into your first shunt surgery or revision Frank Salamone has some tips for you!
Pen Pal Program
PEN PAL PROGRAM The Hydrocephalus Association’s Pen pal program is designed to support kids ages 7- 12. The Hydrocephalus Association’s Pen pal program is designed to support kids ages 7-12 in finding real and lasting...
The Hydrocephalus Scoop on Capitol Hill: Jan/Feb 2022 Update
It’s been a busy time in Congress. Find out what we’ve been up to on Capitol Hill!
Five Scientists Awarded HA Grants for Their Bold and Innovative Work
Announcing our 2021 Innovator Award recipients! These brilliant scientists are exploring new ideas about why hydrocephalus develops and testing new treatments to improve long term outcomes.
Grey Matter Brain Damage
This blog explains the difference between white and grey matter injuries and their effects on the brain.
The Benefits of Boxing
As a health and fitness professional, Sophia tells us that boxing is not about fighting, she believes that with the proper guidance and precautions, boxing can be an empowering and beneficial form of exercise for...
Transitioning to College: Healthcare Management
For many young adults living with hydrocephalus, college is the first time they are managing their medical condition(s) on their own, particularly if the individual has moved away from home to live on campus. For...
Transitioning to College: Academics
There are a lot of moving parts once a student with hydrocephalus commits to a college and moves on to requesting accommodations (for those that need them), honing their self-advocacy skills, and preparing to navigate...
Choosing the Right College
Alongside the typical comparisons for choosing a college, like cost, distance from home, academic major, etc., students with hydrocephalus should consider proximity to a medical center with neurosurgical care as well as compare the services...
College Status and Leave Policies
Students with hydrocephalus may require more flexibility in their college experience, due to unpredictable hospitalization, medical procedures, and illness. It’s important for students and families to understand the policies on full- and part-time student status...
College Programs for Academic and Accessibility Support
Academic support varies across colleges, from peer tutoring and writing centers to specialized programs to schools completely built around educating students with learning disabilities. Additionally, some schools are well known for their inclusive approach to...
Differences Between High School and College Accommodations
It is important for students and families to understand that the services, supports, and accommodations that a student received in high school may not be available in the college setting. The responsibility for requesting and...
The College Search
There is a lot to consider when thinking about transitioning to college with hydrocephalus. Beyond the typical considerations around academic fit and cost, you will also need to think about your medical needs and what...
Mental Health and Wellness for College Students
College is an exciting time for many students but it can also be overwhelming, as students transition to a more independent lifestyle with new academic and social pressures. It can be a lot for some...
TECHNOLOGY UPDATE: Rhaeos, Inc. Awarded NIH Grant to Advance Development of FlowSense Wireless Sensor
Rhaeos, Inc. was awarded an NIH grant to advance their development of wearable sensors to detect failed shunts in patients with hydrocephalus.
Fighting for Hydrocephalus Funding in Congress. October Update
October has been a busy time for Congress, and the Hydrocephalus Association has been hard at work ensuring that we have a seat at the table. We have an exciting new bill introduced and an...
The Importance of a Support System
Living with hydrocephalus can feel overwhelming at times. That’s why building a strong support system is so important. Our team of trained professionals is here to help! Our staff will listen to your concerns and...
I Can Relate Video Series: Who Freaks Out More When It’s Time for Brain Surgery – You or Your Parents?
In this episode of our I Can Relate Video Series, Cree, a high school senior, talks about who gets more anxious when it’s time for her brain surgery—her or her parents.
I Can Relate Video Series: After Brain Surgery, Do You Hide or Show Off Your Scars?
In this episode of our I Can Relate Video Series, Cree, a high school senior, opens up about how she feels about her scars after brain surgery.
I Can Relate Video Series: Do You Prefer the Cold or the Heat?
In this episode of our I Can Relate Video Series, Cree, a high school senior, shares whether she prefers cold or warm weather.
I Can Relate Video Series: Can You Hear Your Shunt?
In this episode of our I Can Relate Video Series, Cree, a high school senior, shares her experience with being able to hear her shunt.
I Can Relate Video Series: Cancelling Plans
In this episode of our I Can Relate Video Series, Cree, a high school senior, opens up about whether she ever lies about canceling plans because of hydrocephalus.
I Can Relate Video Series: Headaches
In this episode of our I Can Relate Video Series, Cree, a high school senior, discusses how she distinguishes between a hydrocephalus headache and a regular headache.
I Can Relate Video Series: Do You Feel Your Parents Are Overprotective?
In this episode of our I Can Relate Video Series, Cree, a high school senior, shares her perspective on whether she feels her parents are overprotective.
I Can Relate Video Series: Are You Comfortable With People Touching Your Hair or Your Head?
In this episode of our I Can Relate Video Series, Cree, a high school senior, shares her thoughts on feeling comfortable with others touching her hair and head.
I Can Relate Video Series: How do you Manage on a Bad Hydrocephalus Day?
In this episode of our I Can Relate Video Series, Cree, a high school senior, talks about how she manages tough days living with hydrocephalus.
I Can Relate Video Series: Are you Getting your Driver’s License?
In this episode of our I Can Relate Video Series, Cree, a senior in high school, discusses driving and hydrocephalus.
I Can Relate Video Series: Who do you tell that you have Hydrocephalus?
In this episode of our I Can Relate Video Series, Cree, a senior in high school, describes subjects that can be difficult in school.
The Hydrocephalus Scoop on Capitol Hill – Sept/Oct 2021
The Hydrocephalus Association has been busy protecting hydrocephalus-related research dollars in Congress, and working with members Congress to recognize National Hydrocephalus Awareness Month.
Announcement About Anuncia ReFlowTM System Mini
Earlier this year, Anuncia Inc., a medical device company focused on the development of treatment devices for hydrocephalus and other cerebrospinal fluid (CSF) disorders, announced that the ReFlowTM System Mini received the U.S Food and...
I Can Relate Video Series: What Subjects do you Find Difficult in School?
In this episode of our I Can Relate Video Series, Cree, a senior in high school, describes subjects that can be difficult in school.
In the NICU: Preparing Families for Life with Hydrocephalus
A recent study explored how neonatal intensive care units (NICUs) can better prepare families that receive a diagnosis of posthemorrhagic hydrocephalus of prematurity (PHHP).
Healthy Eating
Healthy Eating Share Research shows that a balanced diet can contribute to your overall health and help your body work more effectively. Learn more about the importance of healthy foods, diet, and nutrition. What You...
9 Foods to Nourish Brain Health
After having brain surgery, eating nutrient-dense foods that support your brain can promote healing. Learn more about the 9 foods that can help nourish brain health.
Hydrocephalus and Independence
By Madeleine Darowiche, HA Volunteer So, you’re considering living on your own for the first time, but you have hydrocephalus and question if it’s possible? You’ve come to the right place. My name is Madeleine...
How to Reconnect and Trust your Body
In this blog, Bethany Holmes, Certified Integrative Health Coach, and Reiki Practitioner discusses how to reconnect, trust, love, and heal your body after trauma.
A Mystery Disease: One Woman’s Struggle to Get Diagnosed with NPH
Merlin Bott woke up one morning in October 2013 with a severe case of vertigo. It quickly got worse and soon, she became so dehydrated that she had to be hospitalized. Finally after 29 harrowing...
Innovator Award Series: Get to Know Dr. Aditya S. Pandey
In this installment of our Meet the Innovator Award Grantees Blog Series, we interviewed Dr. Aditya S. Pandey, one of four scientists who received a 2020 Innovator Award. Dr. Pandey’s team is testing the use...
The Hydrocephalus Scoop on Capitol Hill March 2021
The cherry blossoms are blooming in Washington, DC, which is a sure sign that the new Congressional session is well underway. Let’s get you up to speed on what’s been happening on hydrocephalus policy issues...
My Thoughts for Teachers
Sarah Kell, an adult living with hydrocephalus, offers thoughts for teachers when working with a child with hydrocephalus.
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.
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...
NPH and Emotional Well-Being
NPH and Emotional Well-Being Share Normal pressure hydrocephalus (NPH) can be overwhelming and emotionally challenging. It is a chronic condition that requires ongoing management, which has an impact on the emotional and mental well being...
Staying Active
Staying Active Share Exercise is key for your overall health. Exercise and staying active can provide physical and emotional benefits as well as improve your mood. Learn from what individuals living with hydrocephalus are doing...
Emotional Well-Being
Emotional Well-Being Share Hydrocephalus can be overwhelming and emotionally challenging. It is a chronic condition that requires ongoing management, which has an impact on the emotional and mental well being of the person living with...
Brianna | Share Your Story
Brianna grew up in and out of the hospital. That’s when she found her passion of becoming a pediatric nurse. Now she’s about to achieve her childhood dream.
NPH and Rehabilitation Services
NPH and Rehabilitation Services Share Undergoing surgery is a critical first step to regaining functionality lost to normal pressure hydrocephalus (NPH), but it may not be the whole solution. After surgery, physical therapy, occupational therapy,...
Balancing Work, School, and Hydrocephalus
In this blog, Carly shares the important takeaways about what it means to balance parts of your life along with hydrocephalus.
Advocacy Toolkit
Advocacy Toolkit Welcome to our Advocacy Toolkit. Here you will find suggestions, tips, and sample documents to use when raising awareness of hydrocephalus with elected officials. We are excited to work together to advocate for...
The Benefits of Informing Your Child’s School about Their Hydrocephalus
Informing your child’s school about hydrocephalus is important. Read these tips to ensure that you’re prepared when talking to the school about your child’s condition.
Get on the Right Career Track
When choosing a career, college major, or educational program, it’s important to take the time to explore your options.
Making Your Work Environment Work For You
Individuals with hydrocephalus can succeed at work despite their condition. Learn how to make your work environment work for you.
Recovering and Maintaining Functionality
Symptom improvement after shunt surgery to treat NPH is impacted by a number of variables. After surgery, PT, OT, and other therapies may be advised to help.
COVID-19 Guidance for People Living with Hydrocephalus
We know that the coronavirus (COVID-19) pandemic is causing concern and raising questions. To help you navigate, here you’ll find information and recommendations.
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...
I Can Relate Video Series: Do You Share Your Scars?
In this episode of our I Can Relate Video Series, Cree, a high school senior, talks about who gets more anxious when it’s time for her brain surgery—her or her parents.
I Can Relate Video Series: Who Worries More? You or Your Parents?
In this episode of our I Can Relate Video Series, Lauren reflects on whether she or her parents worry more about her hydrocephalus.
I Can Relate Video Series: Who Do You Share Your Condition With?
In this episode of our I Can Relate Video Series, Lauren opens up about who she chooses to share her hydrocephalus condition with.
I Can Relate Video Series: What is the Best App You’ve Found?
In this episode of our I Can Relate Video Series, Lauren talks about the best app she’s discovered that helps her manage life with hydrocephalus.
I Can Relate Video Series: Types of Headaches
In this episode of our I Can Relate Video Series, Lauren discusses the different types of headaches she experiences with hydrocephalus.
I Can Relate Video Series: How Do You Tell Your School About Your Condition?
In this episode of our I Can Relate Video Series, Lauren shares her experience with informing her school about her hydrocephalus.
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.
High School
High School Share College is an exciting, intimidating, and emotionally charged event. College opens the door to new opportunities and offers personal development, growth, and independence. Transitioning from high school to college can be difficult...
Headaches and Hydrocephalus
Headaches and Hydrocephalus Share It is not uncommon for people with hydrocephalus to experience headaches. Find the resources, tips, and tools you need to manage daily pain. What You Need to Know Headaches and Hydrocephalus...
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...
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...
20 Powerful Facts About Hydrocephalus
Use our hydrocephalus facts and stats to educate your friends, family, and social followers. Together, we can build public awareness about this condition! 1. Hydrocephalus is a life-threatening condition that affects more than 1 million...
Our Advocacy Impact
We started our advocacy efforts in the late 1990s, representing the patient community at a handful of federally-hosted events. It was not until 2004 that we began to formalize an advocacy strategy when we put...
Your Healthcare Team
Living well with hydrocephalus often requires a team of healthcare providers. Together, you’ll monitor your condition.
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).
NPH and Comorbidities
NPH can frequently co-exist with other age-related neurologic and medical conditions that may produce similar symptoms.
HydrocephalusCONNECT Peer Support
PEER SUPPORT:HydrocephalusCONNECT Talk with someone who understands HA wants you to know that You Are Not Alone – We Are Here For You! The Hydrocephalus Association staff and teams of trained volunteers are ready to...
Transition Initiative: Transitioning from Pediatric to Adult Care
A major milestone in a young adult living with hydrocephalus is the transition from pediatric to adult medical care. Learn about the HA Transition Initiative.
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.
Summer Camp
If you think that your child’s condition will prevent him or her from participating in a summer camp, it’s time to think again. Learn more about camps available!
Living Independently
Hydrocephalus can affect your independence and day-to-day needs, and there are additional considerations to keep in mind. Learn more about living independently and hydrocephalus.
Preparing for College
Are you preparing for college? Learn about the important issues to consider when you’re living with hydrocephalus.
Epilepsy and Hydrocephalus
Epilepsy is common in people with hydrocephalus. Of individuals with shunted hydrocephalus, an estimated 20% have epilepsy
Vision and Hydrocephalus
Some children and adults with hydrocephalus develop vision (eye) problems.
Chronic Pain and Hydrocephalus
Many people with hydrocephalus experience chronic pain although the exact numbers are unknown.
Disclosing in the Workplace
Living with and managing a chronic condition like hydrocephalus affects all aspects of your life, including the workplace. Feelings of fear of stigma are not uncommon.
Research Events
The Hydrocephalus Association sponsors research conferences and workshops to bring together researchers, clinicians and academics from across multiple disciplines.
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.
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.
The Day-to-Day of Headaches and Hydrocephalus
Living with hydrocephalus means living with headaches. In his latest post, Dan discusses headaches, weather changes, and the importance of knowing your body.
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.
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...
Ask the Expert Video Series: Return of NPH Symptoms
In this episode, we explore why symptoms may return after treatment for normal pressure hydrocephalus (NPH).
Ask the Expert Video Series: ETV as a Treatment for NPH
In this episode, we discuss the treatment options for normal pressure hydrocephalus (NPH), including the endoscopic third ventriculostomy, or ETV, a surgical method that allows for treatment without the use of a shunt.
Ask the Expert Video Series: Symptom Improvement after NPH Treatment
This episode explores symptom improvement after treatment for normal pressure hydrocephalus (NPH).
Ask the Expert Video Series: Untreated Normal Pressure Hydrocephalus (NPH)
This episode discusses the long-term prognosis for individuals unable to be treated or who choose not to be treated for normal pressure hydrocephalus (NPH)
Ask the Expert Video Series: Dementia or NPH?
In this episode, we explore the proper diagnosis of NPH and the next steps once a diagnosis has been made.
Ask the Expert Video Series: Transitioning to Adult Healthcare
Planning for transition from pediatric to adult healthcare is key to its success; however, this process can be complex and overwhelming. In this episode of our Ask the Expert Video Series, we discuss how a...
Ask the Expert Video Series: Intracranial Pressure in Hydrocephalus Patients
Is there a normal level for intracranial pressure? How do doctors measure intracranial pressure and how is this procedure helpful for some hydrocephalus patients? In this episode of our Ask the Expert Video Series for...
Ask the Expert Video Series: With No Problems, Should You See a Neurosurgeon?
In this episode of our Ask the Expert Video Series, Drs. Mark Luciano and Abhay Moghekar, from Johns Hopkins Medicine, discuss whether hydrocephalus patients should see a neurosurgeon or neurologist even if they don’t have...
Ask the Expert Video Series: Pregnancy and Hydrocephalus — Is It Safe?
In this episode of our Adult Hydrocephalus Ask the Expert Video Series, Drs. Mark Luciano and Abhay Moghekar, from Johns Hopkins Medicine, answer a commonly asked question – is it safe for women with hydrocephalus...
Ask the Expert Video Series: Headaches and Hydrocephalus
In our Ask the Expert video for adults living with hydrocephalus, doctors from Johns Hopkins Medicine address whether hydrocephalus patients are predisposed to headaches and why. They also discuss ways to alleviate and prevent headaches....