Master meal prep with these tips for planning, cooking, and storing nutritious meals that save time and help you stay on track with your health goals.

Stop feeling tired! Eat these power foods to boost your energy, stamina, and vitality. Discover the best meals to fuel your day and keep you energized.

Learn strategies to help teens with hydrocephalus navigate social dynamics, build confidence, and overcome challenges like anxiety and communication barriers.

Living with hydrocephalus presents unique challenges, but emotional health and resilience are key to not just coping, but flourishing despite them.

Discover how Dereck finds silver linings and strength in everyday moments while living with hydrocephalus and overcoming over 500 brain surgeries.

Discover how to optimize your quality of life with NPH through exercise, support systems, and effective strategies for managing daily challenges.

Prepare for hydrocephalus complications with a personalized emergency plan, including symptoms, medical contacts, action steps, and an emergency kit for peace of mind.

Discover key strategies for balancing life with hydrocephalus, managing health, relationships, and work, while thriving with practical tips and expert guidance.

Misdiagnosed with Parkinson’s, Harry fought for the right diagnosis—NPH. Now, he’s rebuilding his life with therapy, community, and renewed independence.

From overcoming medical hurdles in Brazil to pursuing a degree in medicine, Marcio’s hydrocephalus journey is one of resilience, perseverance, and hope.

Diagnosed at 8, Janay has endured 200+ shunt revisions. Now, she’s advocating, supporting others, and refusing to let hydrocephalus define her.

Mastering high school transition with hydrocephalus starts with the right tools, planning, and support to help students thrive academically and socially.

Born premature, Colton faced hydrocephalus and multiple shunt surgeries. Now, at almost three, he’s thriving and two years shunt failure-free!

Get the latest federal updates on hydrocephalus research, advocacy, and policy changes. Learn how you can take action to protect critical funding and healthcare access!

Diagnosed with hydrocephalus at four months old, Sarah has faced surgeries and challenges. Now a mother, she embraces each day with strength and purpose.

Traveling with hydrocephalus and spina bifida takes planning! Here are my tips for navigating air and train travel, accessibility, and accommodations.

Despite enduring 15 brain surgeries and life-threatening complications, Ayana shares her story to inspire hope and strength in others on the hydrocephalus journey.

Learn the key differences between programmable and fixed pressure shunt valves, how they work, and when each is used to manage CSF drainage effectively.

Shunt systems manage hydrocephalus by redirecting CSF for absorption. Learn about VP, VA, VPL, and LP shunts, how they work, and when they’re used.

Managing prescriptions as an adult? Stay on track with simple tips to organize meds, set reminders, and make prescription management easier.

Learn how normal pressure hydrocephalus (NPH) differs from Alzheimer’s and Parkinson’s, key symptoms to watch for, and why the right diagnosis is essential.

Mindfulness helps manage stress, improve focus, and build resilience for those with hydrocephalus and caregivers. Learn simple ways to incorporate it daily!

Prescription management is easier with routines, reminders, and safety tips, empowering your teen to take charge of their health with confidence.

Struggling with brain fog? These simple productivity hacks will help improve focus, stay organized, and manage daily tasks with ease. Small changes add up!

Discover proven strategies for optimal nutrition to boost brain power, mental clarity, and cognitive function with essential nutrients and brain-healthy meals.

Can Diet Help with Headaches? Learn which foods help prevent headaches, which to avoid, and how hydration, nutrients, and meal timing can make a difference!

Born in the late 1960s, Bill faced early challenges with hydrocephalus but went on to earn a master’s degree, teach, and become a parent, grateful for his stability while recognizing every journey is unique.

Learn how to explain hydrocephalus to a child in simple terms. With support from doctors, family, and friends, kids can live happy and fulfilling lives.

Discover key tips for tracking developmental milestones in kids with hydrocephalus. Learn how to support their growth with expert advice and resources.

The Hydrocephalus Association brought over 50 key leaders from the hydrocephalus community to advocate for change by meeting with their congressional representatives on Capitol Hill.

Struggling with fatigue? Discover daily habits to boost energy, improve focus, and regain control over your well-being with simple, effective strategies.

To address the challenges of traditional shunt systems, scientists are developing innovative devices known as “smart shunts”. These emerging technologies aim to make hydrocephalus management easier.

My journey to fitness with hydrocephalus taught me resilience, self-care, and confidence as I overcame challenges and embraced progress.

Discover key workplace accommodations for employees with hydrocephalus, including flexible scheduling, ergonomic setups, and emergency preparedness. Learn how to advocate for support, manage symptoms, and thrive in your career.

Living with hydrocephalus? Discover how to set boundaries, say no without guilt, and take control of your health with these empowering tips.

Struggling with sleep? Discover common challenges, practical tips, and tools to improve rest and enhance your overall well-being.

The Hydrocephalus Association’s research department has expanded its outreach efforts to include engineers, aiming to broaden their network beyond physicians and scientists.

Discover how individuals with hydrocephalus can stay active and healthy. From low-impact exercises to high-intensity activities, find tips to safely incorporate fitness into your lifestyle.

Overdraining and underdraining with hydrocephalus can lead to significant challenges. Learn about the causes, symptoms, and possible solutions.

Cerebrospinal fluid (CSF) leaks are a challenging complication of hydrocephalus. Learn about causes, symptoms, treatments, and prevention to stay informed and supported.

A shuntogram, or shunt patency study, checks if a shunt is working properly by tracking fluid flow to identify blockages or leaks.

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.

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.

Dereck’s journey with hydrocephalus has made him resilient, navigating over 500 surgeries and countless challenges. Despite unexpected turns, he finds fulfillment in volunteering and inspiring hope in others.

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.

Navigating relationships with hydrocephalus requires patience, open communication, and mutual support. With understanding and balance, strong connections can thrive beyond the challenges.

Learn how hydrocephalus affects intimacy and find ways to strengthen emotional and physical connections in romantic relationships.

Even though second opinions are a common and accepted practice in medicine, many people feel uncomfortable asking for them.

Help further hydrocephalus research by participating in clinical research trials. Your input is valuable in our quest to find a cure for hydrocephalus.

The Innovator Awards fund groundbreaking projects advancing hydrocephalus research, driving innovation, and improving outcomes for those impacted worldwide.

Despite the countless challenges of living with hydrocephalus, Fred has found resilience through self-advocacy, community connection, and a passion for supporting others facing similar journeys.

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.

Ryder, an 11-year-old living with spina bifida and hydrocephalus, has faced countless challenges, yet his resilience inspires his family every day.

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).

Congenital hydrocephalus is caused by a complex interaction of genetic and environmental factors during fetal development.

Acquired hydrocephalus develops after birth as a result of neurological conditions such as head trauma, brain tumor, cyst, brain bleed, or infection.

Have you or a loved one been newly diagnosed with hydrocephalus? We’re here to help you on this journey!

This coloring book helps children with hydrocephalus understand the condition through the story of Barney Beagle, making learning fun and engaging 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.

Our guide offers essential information on hydrocephalus, including supportive programs to help your family navigate this journey with confidence!

Stay informed with the latest updates on hydrocephalus advocacy from Capitol Hill as we highlight key legislative efforts and community engagement for September 2024.

The concept of Generalizability in research studies is especially important for individuals living with hydrocephalus because there are so many different causes.

We are continuing our series on the role of cell junctions and the ventricular zone in the development of hydrocephalus.

It has now been almost 4 months since Oliver had his shunt placed, and he is living life to the fullest!

Cadogan, born with hydrocephalus, has faced multiple surgeries and challenges, but continues to show resilience and progress with the strong support of his family.

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.

After years of misdiagnoses, Lauren was finally diagnosed with hydrocephalus in 2021 and underwent successful endoscopic third ventriculostomy (ETV) surgery.

Cerebrospinal Fluid (CSF) flows through the four ventricles and then flows between the meninges in an area called the subarachnoid space.

Team Hydro is a group of dedicated volunteers and swimmers helping to raise awareness and funding for advanced research of hydrocephalus.

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.

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.

Nineteen. That’s how many days Benaiah’s family had with him before realizing how much he was up against. Benaiah’s story is hard, but it’s a good one, filled with hope and strength.

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.

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.

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.

Having a large number of participants reduces the risk of accidently having extreme, or biased, groups. Let’s find out why.

Our Research Blog 101 series continues with a look at how randomization works in clinical trials.

Creating and maintaining a good relationship with qualified doctors is vital in overall healthcare planning. We have compiled lists of questions.

Creating and maintaining a good relationship with qualified doctors is vital in overall healthcare planning. We have compiled lists of questions.

Creating and maintaining a good relationship with qualified doctors is vital in overall healthcare planning. We have compiled lists of questions.

Creating and maintaining a good relationship with qualified doctors is vital in overall healthcare planning. We have compiled lists of questions.

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.

As part of its strategic plan, HA’s research team expanded its network to include bioengineers, inspiring a new generation to drive device innovation for hydrocephalus—leading to the Engineering Roadshow!

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.

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.

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)

The Hydrocephalus Association recently partnered with the Defense Health Research Consortium (DHRC) to host a research-centered Congressional Briefing on Capitol Hill.

Olga confronted unexpected health hurdles at 62. From navigating unexplained falls to advocating for her treatment, her story embodies resilience.

Celebrate Influential Leaders during National Women’s History Month. Dr. Blazer-Yost, scientist and medical researcher is making strides for hydrocephalus.

Celebrate Influential Leaders during National Women’s History Month. Dr. Robinson & Dr. Jantzie are both revolutionary women making strides for 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.

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.

“Our miracle baby is now a young woman who has been truly blessed and remains steadfast.” Read Tyerria’s story, told by her mom, Terra.

Learn about the genetics of neural tube defects, which can lead to hydrocephalus.

Dr. Koschnitzky continues our Science Facts blog series with an explanation of the various clinical trial designs we find in hydrocephalus research.

If you have hydrocephalus, the hospital may be a very familiar place. Learn tips and tools on how to cope with hospitalizations.

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 has been shown to have multiple causes, including numerous genetic origins. Dr. Jenna Koschnitzky explores genetic mutations in a three blog series.

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.

People with hydrocephalus and their caregivers are highly encouraged to become active, assertive members of their treatment team.

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!

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.

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!

Our Teachers’ Guides address common learning challenges faced by many children with hydrocephalus as well as their needs in mainstream classrooms.

Our Teachers’ Guides address common learning challenges faced by many children with hydrocephalus as well as their needs in mainstream classrooms.

Our Teachers’ Guides address common learning challenges faced by many children with hydrocephalus as well as their needs in mainstream classrooms.

Our Teachers’ Guides address common learning challenges faced by many children with hydrocephalus as well as their needs in mainstream classrooms.

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, 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.

Working with both pediatric and adult providers, we have developed a tool for you to use to help ensure a smooth transition of 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.

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 (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 off a child to daycare is scary on its own. We have developed a checklist to help you prepare.

Some kids with hydrocephalus face difficulty developing their social skills. This article talks about those difficulties and suggests tools for overcoming them.

Guidance for parents so they can learn how to develop and maintain good communication between with school personnel.

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.

Bullying. We hold on to the 1950s image of the big kid on the playground taunting, name-calling, pushing, and intimidating other children.

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 is often seen as a rite of passage into adulthood. However, it’s not uncommon for individuals with hydrocephalus to experience challenges.

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.

Kristen shares Cecilia’s inspiring journey, born at 29 weeks, a testament to resilience and the human spirit’s triumph.

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.

James recounts his journey navigating academic success and personal growth while living with hydrocephalus. His story underscores resilience and the call for improved support.

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.

There’s one surgical complication that is seldom if ever, mentioned before or after surgery, post-surgical depression. Learn more.

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. 

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Evelyn shares how the surgical placement of a shunt for NPH transformed her life.

Sukey shares her husband’s journey with normal pressure hydrocephalus (NPH).

Frank Salamone shares tips for living with normal pressure hydrocephalus (NPH).

Frank Salamone, L.C.S.W. is living with NPH and shares his story.

At the age of 10 months, Kyleigh was diagnosed with obstructive hydrocephalus, also known as non-communicating hydrocephalus. She developed hydrocephalus from a tectal glioma (brain tumor).

Marcos acquired hydrocephalus at 3 days old due to a brain bleed. Growing up with hydrocephalus, he faced multiple surgeries and hospital stays. But those challenges led him to his life mission!

Mira was diagnosed with NPH at the age of 79. She believes in early detection of hydrocephalus.

The 2022 Innovator Award recipients are investigating novel aspects about the development of hydrocephalus and evaluating innovative treatments to enhance long-term results.

Kim was diagnosed with normal pressure hydrocephalus (NPH) at the age of 62.

If you are an adult with NPH heading into your first shunt surgery or revision Frank Salamone has some tips for you!

Trish was diagnosed with NPH and had shunt surgery. Thanks to that and several kinds of therapy, Trish is now back to doing what she loves.

Gary has been living with NPH for over 40 years. He hopes the information he offers is helpful to someone that is just learning about the condition.

Dorothy’s goal is to help others find an accurate NPH diagnosis and treatment to avoid what she, and so many, have experienced.

It’s been a busy time in Congress. Find out what we’ve been up to on Capitol Hill!

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.

This blog explains the difference between white and grey matter injuries and their effects on the brain.

Rhaeos, Inc. was awarded an NIH grant to advance their development of wearable sensors to detect failed shunts in patients with hydrocephalus.

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.

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.

In this episode of our I Can Relate Video Series, Cree, a high school senior, shares whether she prefers cold or warm weather.

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.

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.

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.

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.

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.

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.

In this episode of our I Can Relate Video Series, Cree, a senior in high school, discusses driving and 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 Association has been busy protecting hydrocephalus-related research dollars in Congress, and working with members Congress to recognize National Hydrocephalus Awareness Month.

In this episode of our I Can Relate Video Series, Cree, a senior in high school, describes subjects that can be difficult in school.

A recent study explored how neonatal intensive care units (NICUs) can better prepare families that receive a diagnosis of posthemorrhagic hydrocephalus  of prematurity (PHHP).

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.

In this blog, Bethany Holmes, Certified Integrative Health Coach, and Reiki Practitioner discusses how to reconnect, trust, love, and heal your body after trauma.

Sarah Kell, an adult living with hydrocephalus, offers thoughts for teachers when working with a child with hydrocephalus.

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.

Despite the headaches, vertigo and learning challenges caused by her hydrocephalus, Elis is studying to pursue her dream of becoming a lawyer and loves trying new adventures!

Cathy had always experienced headaches. But in 2018 a laughing fit sent her to the emergency room, where she learned she had hydrocephalus.

Samantha lived her entire life with a shunt to treat her hydrocephalus until an emergency trip to the hospital at age 22 changed everything.

Danielle spent years with debilitating symptoms that caused her to struggle in school and life. Eventually as an adult, she was treated for hydrocephalus and it changed her life.

Zoe is not even a year old but has already endured 13 surgeries due to hydrocephalus. Despite her challenges, she continues to amaze everyone with her smiles and joy.

When Isaac developed hydrocephalus, his parents were told that he would have severe disabilities his entire life. Now, the spunky 3-year-old is defying the odds – running, laughing, dancing, speaking two languages and more!

I have learned that no matter what I’m going through, I can have a positive attitude and a determination to overcome any obstacle I meet.

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.

My perception of hydrocephalus has changed. I no longer view it as a limitation nor a difference to be scared of, but a unique quality that brings out my greatest strengths while nurturing my weaknesses.

What happens if you wake up one morning to crippling headaches and learn that you’ve had hydrocephalus your whole life? That’s what happened to Lynn.

“I use my #hydrocephalus fears to inspire me to live without regrets. So, I’ve done every WALK to End Hydrocephalus held in my hometown and intend to continue to raise money and awareness.”

In this blog, Carly shares the important takeaways about what it means to balance parts of your life along with 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.

When choosing a career, college major, or educational program, it’s important to take the time to explore your options.

Individuals with hydrocephalus can succeed at work despite their condition. Learn how to make your work environment work for you.

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.

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.

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.

In this episode of our I Can Relate Video Series, Lauren reflects on whether she or her parents worry more about her hydrocephalus.

In this episode of our I Can Relate Video Series, Lauren opens up about who she chooses to share her hydrocephalus condition with.

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.

In this episode of our I Can Relate Video Series, Lauren discusses the different types of headaches she experiences with hydrocephalus.

In this episode of our I Can Relate Video Series, Lauren shares her experience with informing her school about her hydrocephalus.

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.

Living well with hydrocephalus often requires a team of healthcare providers. Together, you’ll monitor your condition.

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

NPH can frequently co-exist with other age-related neurologic and medical conditions that may produce similar symptoms.

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.

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.

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!

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.

Are you preparing for college? Learn about the important issues to consider when you’re living with hydrocephalus.

Epilepsy is common in people with hydrocephalus. Of individuals with shunted hydrocephalus, an estimated 20% have epilepsy

Some children and adults with hydrocephalus develop vision (eye) problems.

Many people with hydrocephalus experience chronic pain although the exact numbers are unknown.

The Hydrocephalus Association sponsors research conferences and workshops to bring together researchers, clinicians and academics from across multiple disciplines.

“Max is our inspiration for everything. As his parents, we couldn’t be prouder of him!”

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.

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.

Living with hydrocephalus means living with headaches. In his latest post, Dan discusses headaches, weather changes, and the importance of knowing your body.

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.

In this episode, we explore why symptoms may return after treatment for normal pressure hydrocephalus (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.

This episode explores symptom improvement after treatment for 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)

In this episode, we explore the proper diagnosis of NPH and the next steps once a diagnosis has been made.

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.

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.

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.

The award allows these scientists to expand their research on posthemorrhagic hydrocephalus (PHH).

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!

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.

What specific factors are associated with VP shunt failure within 30 days of its placement? Do secondary shunts fail more often than primary (or first) shunts?

Rafael is a PhD student in Learning, Design, and Technology. He is currently developing a narrative video game to discuss “hidden disabilities”, focusing on his own experience with hydrocephalus!

Some of us with Hydrocephalus have the added stress of learning differences. These factors come into play when we start thinking about college. 

Idiopathic NPH (iNPH) is a disorder commonly seen in older adults. The three common symptoms seen in adults with iNPH include: gait disorder (difficulty walking), inability to control urination, and behavioral disturbances.

A few months ago, I noticed that my balance was deteriorating so I mentioned it to my GP at my annual physical.  He immediately ordered a CT scan and more Physical Therapy. 

A recent study published in Nature, Dr. Chay Kuo, out of Duke University, discovered a mechanism that may lead to the development of Postinfectious Hydrocephalus.

Besides the Chiari 2 malformation, there was no sign of hydrocephalus. At 38 weeks, our beautiful baby boy Cayden was born.

Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!

Hydrocephalus research is conducted all over the world. A recent study sheds light on the risk of developing shunted hydrocephalus after a specific type of brain bleed.

My hydrocephalus has played a role in shaping me into the person I am today and has changed my outlook on life. “Always play the best game with the cards you’ve been handed.”

I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!

To determine if ETV-CPC provided a benefit compared to ETV alone or placement of a shunt, the HCRN decided to conduct a study which was recently published in the Journal of Neurosurgery: Pediatrics.

As Vincent recovered we scoured the internet looking for anything on Hydrocephalus. We had no idea so many people of all ages suffered from this condition!

Luna was born 7 weeks early and delivery went pretty well, and after 17 hours our baby girl was finally here!

The CSF Shunt Entry Site Trial has reached the 75% mark in patient enrollment, that is 385 patients enrolled!

Hydrocephalus. I had never heard of the word and it sent me into a panic. The next day we named him Hiro, which means vast  in Japanese, we thought the name was very fitting!

Most people with hydrocephalus have to live with the condition for their whole lives. Shunt surgery is just a method of treatment for hydrocephalus, but it is not a cure.

Family members and friends remained very confused about Wylie’s condition. It was from that point on that my husband and I would make it our mission to educate others on hydrocephalus.

Department of Defense funding of two hydrocephalus researchers reflects the success of the Hydrocephalus Association’s Research and Advocacy Initiatives.

He’s the funniest, sweetest, most caring, and heartfelt little boy I’ve ever laid eyes on and I’m so proud of him.

Having a shunt has made my life anything but boring, and adjusting to what I call, “life in low resolution,” was not easy, it has changed my life’s path, but it hasn’t ruined it.

The author of Adolescence Interrupted, a coming-of-age memoir that serves as a motivational road map for anyone forced to confront the overwhelming reality of a daily existence without stability or safety nets.

Trish recommends finding an activity to help you challenge both your mind and body and have fun while doing it! Read more about her exercise tips for NPH patients.

This is Lyra. She is a beautiful, sassy, and strong 3 year old who was diagnosed with Hydrocephalus.

Matthew needed additional brain surgeries to move the catheter into his ventricle where, unless a cure is found, it will stay for the rest of his life. 

Maylee has an amazing, happy little personality despite all she’s been through.  She is truly a tough little hydrocephalus warrior!

In the end, we had no answer to what caused Logan’s acquired hydrocephalus but it didn’t matter, he can do anything he puts his mind to and Hydrocephalus will not stop him!

An MRI in January 2016 revealed a break in the catheter and I prepared myself for surgery number 5 in one year!

There are two common treatment options available for infants that suffer from Aqueductal stenosis: implantation of a shunt or an endoscopic third ventriculostomy

While shunt implantation is a typical treatment option for people with hydrocephalus, there have been surprisingly few advances to decrease shunt failure rates since the 1950s

The Hydrocephalus Association’s annual Vision Dinner highlights the advances in research that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

On January 22nd my water broke with my second child. The problem: He wasn’t due until March 10!

We had to make the decision to either deliver the boys to save baby ‘B’, or let him go, so that the other two could keep growing. We chose to deliver.

A recent study expands these results to posthemorrhagic hydrocephalus in premature infants. Please take a moment to read more about this important research.

My identical twin girls Taelley and Pelley were born at 26 weeks 6 days. Too early!

This is the first part of Trish’s interview with cognitive therapist Olivia Bell. It covers who benefits from CT, how to find a therapist, and how to get the most out of the therapy appointments. 

Current research suggests that a cascade of events involving cell junctions, the VZ, and the SVZ may be the cause of fetal-onset hydrocephalus and its accompanying neurological disorders.

At two and a half years old it was determined her ETV was not working any longer. She had her first shunt placed and a month later had her first revision.

Brain surgery is scary stuff.  A new baby is scary stuff.  3 months in the NICU and spitting in the face of death are all scary stuff.  Together they are absolutely petrifying.

“During an emergency 18-week scan after sustaining a blow to my tummy, the technician had a very worried look on her face.,. It was there my fears went from bad to worse.”

I had a very typical pregnancy with Blythe. She is my third child an not unlike her brothers. Blythe Raye was born at 40 weeks on October 24, 2016 weighing 7 pound 11 ounces.

When it comes to treating balance issues that attend Parkinson’s and other brain and balance disorders such as hydrocephalus and aging, there’s only so much medication can do.

We are determined to continue to raise awareness for hydrocephalus and help those impacted as much as possible.

Researchers aim to improve the way that physicians identify problems with a shunt implant.

When Lucy woke up from surgery, she looked right at us and we couldn’t believe the immediate changes. A year later, we are revision free, she is doing wonderful and she is meeting her milestones.

The doctor explained to us that Ashley’s brain was bleeding and not draining properly. She used the word hydrocephalus, which I’m pretty sure was the first time I had ever heard that word.

People often ask us how we do it- how do we cope with all the surgeries? For us it is really very simple…you just do what you have to do.

Non-invasive tool may be instrumental in evaluating elevated ICP – a symptom of hydrocephalus and shunt malfunction.

A recently published study attempts to shed light on the long term outcomes of untreated iNPH by examining mortality rates, risk of dementia, and symptom progression in individuals with ventricular enlargement.

By the time Trish was diagnosed with NPH and had shunt surgery, she had lost her ability to walk unaided, so her neurosurgeon gave her a prescription for physical therapy.

Robby is a happy young man with an outgoing personality and a great sense of humor.

Germinal matrix hemorrhage (GMH) is a brain bleed that occurs in approximately 3.5 per 1000 live births and remains a leading cause of mortality and lifelong morbidity in premature infants.

Rylie is a bright and bubbly 3-year-old who loves to laugh and play.

Learn more about a recent study that suggests stimulating environments can improve cognitive outcomes for children living with hydrocephalus.

She is an incredibly smart, active two-year-old with a great sense of humor.

I am so blessed to have such a diagnosis. It makes me appreciate the good days, and makes me realize how valuable and precious health truly is.

From that last surgery at the age of eight, I have been in great health.

I view the challenges I have faced as an avenue for opportunity.

Jonathan, who lives with spina bifida and hydrocephalus, shares discovering fencing as a form of exercise and competition.

The CSF Shunt Entry Site Trial has reached the halfway mark in patient enrollment – that is 224 patients enrolled!

The Hydrocephalus Association is pleased to announce the funding of three hydrocephalus researchers through the HA Network for Discovery Science (HANDS), Innovator Award.

Four. That is how many different hospitals I visited trying to transition from a pediatric to an adult neurosurgery program in the midst of a shunt malfunction.

Congenital hydrocephalus
Receptionist/Secretary

Sandy was diagnosed with hydrocephalus when she was 12, but not treated until she was 18. She is in the group of first generation hydrocephalus survivors!

In this episode of our Ask the Expert Video Series, Marion L. (Jack) Walker, Amanda Garzon, and Jennifer Bechard discuss whether a shunt that is no longer needed can be safely removed.

In this episode of our All Ages Ask the Expert Video Series, Marion L. (Jack) Walker, Amanda Garzon, and Jennifer Bechard discuss abdominal pain in individuals with hydrocephalus.

In this episode of our Ask the Expert Video Series, Marion L. (Jack) Walker, Amanda Garzon, and Jennifer Bechard discuss the effects of barometric pressure on individuals with hydrocephalus.

In this episode of our Ask the Expert Video Series, Marion L. (Jack) Walker, Amanda Garzon, and Jennifer Bechard discuss the connection between hydrocephalus and epilepsy.

In this episode of our Ask the Expert Video Series, Marion L. (Jack) Walker, Amanda Garzon, and Jennifer Bechard discuss the symptoms of shunt overdrainage.

In this episode of our Ask the Expert Video Series, Marion L. (Jack) Walker, Amanda Garzon, and Jennifer Bechard discuss shunt revisions and whether it’s common to go 20 years without needing one.

In this episode of our All Ages Ask the Expert Video Series, Marion L. (Jack) Walker, Amanda Garzon, and Jennifer Bechard discuss abdominal pain in individuals with hydrocephalus.

Workshop on Posthemorrhagic Hydrocephalus (PHH) proves the potential for researchers to alter the course of the development of hydrocephalus and its long-term outcomes.

Layla was born with an Occipital Encephalocele which caused her hydrocephalus. She’s a happy toddler, hitting her milestones and bringing joy to her family after a successful shunt placement.

Summer is right around the corner. Where will you child go to summer camp this year? A young adult from our community offers some insight and tips.

Edgar was diagnosed with communicating hydrocephalus as a child.

Brianna was born with hydrocephalus and Dandy Walker Syndrome. With aspirations to become a doctor, Brianna refuses to let hydrocephalus run her life.

Cohen was born with hydrocephalus and later diagnosed with a rare, sporadic cerebellar malformation called rhombencephalosynapsis associated with Gomez-Lopez-Hernandez Syndrome. But it does not stop him from being every bit of wonderful!

ISHCSF newsletter highlights Hydrocephalus Clinical Research Network (HCRN) studies around hydrocephalus shunt infection rates and risk factors.

2015 Awardees focused on research to better understand why hydrocephalus develops and to identify therapies to prevent or reverse hydrocephalus.

Robert was diagnosed with hydrocephalus at two weeks of age.

Dara Tannariello offers advice on how to tackle the college application process and shares insight from her personal experience.

Oliver acquired hydrocephalus from a brain tumor when he was 18 months old. He doesn’t let any of this slow him down. He loves going to preschool and playing with his little sister, Kate.

Melinda was diagnosed with congenital hydrocephalus at the age of 18. In the summer of 2013, her symptoms escalated to having migraines every day, urinary incontinence, vomiting, and severe neck pain.

Jessie acquired hydrocephalus from a brain bleed and she has decided to share her story in the hopes that by talking, we can end the negative stigma around differently-abled people.

Congenital hydrocephalus from a brain bleed

Lars spent 114 days in the NICU and went through 6 surgeries while there.

Merlin was diagnosed with normal pressure hydrocephalus (NPH). She is a retired international flight attendant.

The discovery of lymphatic vessels in the brain creates a new focus for researchers looking for non-invasive treatments for hydrocephalus.

Danielle was diagnosed with hydrocephalus at 18 months old.

Diane was born with hydrocephalus. She is now a 5th grade teacher.

Matthew acquired hydrocephalus from a brain bleed. Currently, he is a security officer and he is married with 5 kids. He is working and accomplishing things that doctors thought would not be possible.

Emma was diagnosed with hydrocephalus at 9 months old and has undergone six shunt revisions since her shunt placement.

Carly acquired hydrocephalus from a brain bleed. She says that shunts quit; she doesn’t!

Elliot acquired hydrocephalus from aqueductal stenosis. His hydrocephalus was treated with an ETV/CPC. He continues to amaze his family every day with his abilities and determination.

Together, the HA-funded HCRN, AHCRN, and HANDS are changing how hydrocephalus research is conducted and accelerating research progress.

Bryant, our new guest blogger, shares openly about the unconditional support of his fiancee and resilience of their relationship as he lives with hydrocephalus.

How do surgeons make decisions? How do they stand by those decisions and evaluate themselves? The HCRN set out to answer these questions in their study.

Diagnosing the need for a shunt early after someone has had a brain bleed could prevent additional neurological deterioration, study finds.

How do the cells of an infant’s developing brain react to the pressures of hydrocephalus? Our former MYI recipient, Dr. Eskandari’s, goal is to find out.

Announcing the Hydrocephalus Association’s 2014 Resident’s Prize Awardee.

PCORI is awarding a $1.8 million grant in support of a HCRN-proposed randomized control trial to determine the most effective entry site for placing a shunt.

A proof of concept paper shows that drugs delivered through a nasal spray could one day provide a non-surgical way to manage hydrocephalus.

Our guest blogger talks about the thrill of the first date and whether or not to bring up living with hydrocephalus.

The Hydrocephalus Association and the Rudi Schulte Research Institute (RSRI) announce a joint research venture with Dr. Mark Wagshul.

The Hydrocephalus Association aims to help our community understand the latest findings coming out of the hydrocephalus research community. In this blog, we summarize a study about Diffusion Tensor Imaging (DTI) and pediatric hydrocephalus.

Dr. David Limbrick discusses his current research study which aims to develop a complementary tool to supplement the information from imaging in order to determine the best time to treat infants with post hemorrhagic hydrocephalus.

In a new Research Department blog series, HCRN Update, Ashly Westrick interviews Dr. Jay Wellons, principal HCRN investigator for the Shunt Outcomes in Post Hemorrhagic Hydrocephalus study.

One way the Hydrocephalus Association promotes research and leadership in hydrocephalus is through our annual Resident’s Prize.

The Hydrocephalus Association announces the 2010 Resident’s Prize Awardee, Ramin Eskandari, MD, MS.