Navigating healthcare can be a challenge for anyone, but for children, especially those managing chronic conditions like hydrocephalus, learning to communicate effectively with doctors, nurses, and specialists is essential. Empowering your child to become their own advocate doesn’t just help them in childhood; it equips them with the tools they’ll need for a lifetime of confident, independent healthcare management. 

Developing self-advocacy skills early on also lays the foundation for a trusting relationship with their healthcare team, one based on open communication and mutual respect. When children learn to express themselves clearly, their healthcare providers can better understand and address their needs, creating a sense of partnership in their care that grows stronger over time. As a parent, you may feel the instinct to step in, but teaching them these skills early on can have long-lasting benefits. For some, this might lead to independence in managing healthcare, while for others, it could help them communicate effectively with trusted advocates who are there to support them throughout their lives.

Start with Building Confidence

Empowering your child begins with nurturing their confidence and helping them recognize that their voice matters. Remind them often that their thoughts, feelings, and experiences are both valid and important. Showing your child that you trust them to express how they feel helps them understand that their perspective holds weight, even in situations where you, as the parent, might feel inclined to speak for them.

Empowerment Begins Early

It’s never too early to start helping your child feel empowered to make choices. Empowerment doesn’t always have to come from big decisions — it can begin with the small, everyday moments that help children recognize their voice and opinions matter. Simple choices, like deciding what to eat for lunch, what to watch on TV, or whether to go to the library or the park, all help build a sense of independence and self-assurance. 

By giving your child opportunities to make these low-stakes decisions, you’re showing them that their preferences and input have value. Over time, these small choices lay the groundwork for bigger ones —like speaking up about how they feel or expressing their needs during a medical appointment. Every “what do you think?” moment helps your child gain the confidence to trust their own judgment and communicate it clearly. 

As they get older, start encouraging them to speak up in other low-pressure settings, like sharing their preferences at home or voicing their thoughts with teachers. As they grow, you can also guide them to communicate with teachers about their condition and how it might impact their schoolwork. This encourages them to take accountability and become partners in their own education, fostering a supportive academic environment that meets their unique needs. 

This approach isn’t about diminishing a parent’s role but rather about showing your child that you believe in their ability to communicate what only they can truly feel. Though it may be tempting to step in, as parents naturally want to protect and guide, it’s important to recognize that children often understand their own bodies and emotions better than we think. Teaching them to trust their voice and communicate their needs offers a gift that will serve them well into adulthood: the confidence to advocate for themselves, whether independently or with trusted support.

Practice Eye Contact and Body Language

One of the fundamental aspects of self-advocacy is establishing a connection with others through eye contact and positive body language. Begin by modeling this behavior and gently encouraging your child to try it as well. Eye contact shows confidence and helps others take them seriously, which is especially important when interacting with healthcare providers. Start small: encourage them to make eye contact when greeting the nurse or doctor, and gradually help them extend this to listening and speaking parts of their appointments. 

Introducing these skills in everyday settings is also helpful. For instance, when you’re out to eat, encourage your child to order their own meal. This simple act of delivering their needs to a server reinforces eye contact, clear communication, and confidence. Small practices like these help them build comfort with speaking up, so they’ll feel more at ease when they need to advocate for themselves in a medical setting.

Teaching Communication Skills 

The art of self-advocacy requires clear communication, which can be challenging for children, especially in medical settings that might feel intimidating. To build these skills, practice at home by role-playing healthcare scenarios. Take turns being the doctor or nurse, asking questions, and discussing answers. Encourage your child to describe their symptoms or feelings accurately and honestly, even when a situation feels uncomfortable. These exercises help them gain confidence in expressing themselves and reinforce the idea that their voice matters in shaping their care. 

For example, if your child is experiencing pain or discomfort, help them find ways to describe it, whether it’s “sharp” or “dull,” “constant” or “comes and goes.” Teaching them to communicate these specifics helps healthcare providers understand their needs better, empowering your child to become a meaningful part of the conversation around their care. Through this process, they’ll begin to see healthcare providers as trusted partners who value their input and work alongside them to address their health needs. 

Clear and respectful communication is a cornerstone of self-advocacy. Encourage your child to share their thoughts and feelings openly and let them know that as long as they are respectful, they can say anything they need to express. This reassurance helps them feel safe to speak honestly about their needs, even when discussing uncomfortable topics. It also helps foster a respectful rapport with healthcare providers, who will increasingly see your child as an engaged participant in their own care. 

Practicing tone and word choice at home can also help. Explain that effective communication is about more than just the words; they convey respect, attentiveness, and understanding, all of which help create a productive dialogue with healthcare providers. Learning to communicate this way allows your child to navigate healthcare situations confidently and respectfully, setting the foundation for lifelong self-advocacy and a strong, trusting relationship with their healthcare team.

Know When to Step In and When to Step Back

It’s natural to want to step in and speak for your child, especially when you’re concerned, they may miss crucial details or feel overwhelmed. However, stepping back and allowing them to speak, even if they pause or struggle, is essential for their growth. You can gently prompt them by asking clarifying questions if needed, but let them try to express themselves first. This shows them you believe in their ability to communicate their needs and feelings. 

At times, you may need to step in to add extra information or clarify points that may be beyond their understanding. Frame these moments as a way to support their communication, not replace it. Emphasize that they are the ones who understand their bodies best, and you’re just there to fill in gaps if needed.

Reinforce the Message: “No One Knows Your Body Better Than You Do”

Empower your child with the knowledge that they are the expert on their own body. This affirmation can be especially important for children with chronic conditions like hydrocephalus, where regular communication about symptoms and sensations is part of their daily life. Encourage them to trust their feelings, voice when something doesn’t feel right, and assert themselves if they feel they aren’t being understood.

Preparing Them for Transition to Adult Care

Advocacy skills are foundational for the transition to adulthood, where they’ll eventually manage appointments, medications, and health decisions independently. Preparing them for this stage is a gradual process. As they grow older, involve them in keeping track of medications, updating their medication list, and understanding why they take each one. Knowing their medications not only builds a sense of responsibility but also helps them understand what has or hasn’t worked for them in the past, which is essential information when discussing options with healthcare providers. 

For example, you might show them how to update their medication sheet regularly, explaining the importance of accuracy. Over time, they’ll become familiar with their health history, which will help them articulate their needs more effectively and discuss their healthcare options confidently. If they’re ready, allow them to lead discussions during visits with healthcare providers, stepping in only as needed. 

This gradual independence builds confidence and ensures that by the time they transition to adult care, they’ll feel prepared to advocate for themselves or work with trusted advocates to do so.

Embracing Mistakes as Part of the Learning Process 

Self-advocacy is a skill that improves with practice. There will be times your child may struggle to express themselves fully, or they may forget key details. Instead of stepping in or showing frustration, use these moments as learning opportunities. Reassure them that advocating for themselves is a journey, and every attempt brings them closer to becoming comfortable with it.

The Parents’ Role: Encouragement and Belief

As a parent, the best way you can support your child is by showing belief in their abilities, even when they make mistakes. Encourage them by celebrating small victories, such as speaking up about a specific symptom or answering a doctor’s question on their own. With your encouragement, they’ll gain confidence in their unique voice and learn to trust their instincts. 

Teaching your child the importance of self-advocacy provides them with a powerful tool that extends beyond healthcare. It teaches them to respect their feelings, communicate effectively, and take charge of their needs, a skill that will serve them well in every area of life. Remember, even though stepping back can feel challenging, you’re empowering them to become confident, self-sufficient individuals who can navigate their healthcare and life independently.

Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2026, and written by Denise Bechard.

A new study titled Access to Healthcare for Hydrocephalus in the United States: Analyzing the Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER), published in the journal Risk Management and Healthcare Policy, sheds light on the real-world challenges many people with hydrocephalus face when trying to access medical care in the United States.

HAPPIER is a patient-reported registry led by the Hydrocephalus Association, where individuals with hydrocephalus and their caregivers share diagnosis, treatment, and healthcare experiences, and more. In this study, more than 600 participants helped researchers better understand who people turn to for care, how often they see specialists, and what barriers stand in the way.

What did the study find?

• Many adults struggle to find specialists. Almost 1 in 4 adults reported they do not have access to a neurosurgeon, and nearly half said they do not have access to a neurologist. These challenges were less common for children.
• Adults see specialists less often. Even when adults do have access to a neurosurgeon or neurologist, they reported fewer routine visits compared to pediatric patients.
• Insurance affects where people seek care. In non-emergency situations, about half of participants said they would contact a neurosurgeon first. However, people with Medicaid were more likely to report going to the emergency room, which may reflect difficulty finding providers who accept their insurance.
• Cost remains a major barrier. One-third of participants reported difficulty getting care because of high out-of-pocket costs, especially for medications, specialist visits, and rehabilitation services. These challenges affected families across income levels, not just those with lower incomes.

Why is this important?

Hydrocephalus is a lifelong condition, and regular access to knowledgeable providers is critical. This study shows that having insurance does not always mean having access, and that adults with hydrocephalus, in particular, may face gaps in ongoing care.

These findings highlight the need for better long-term care planning, smoother transitions from pediatric to adult care, and healthcare policies that make it easier for people with hydrocephalus to get the care they need, when they need it.

Your participation in HAPPIER helps make this research possible and strengthens the collective voice of the hydrocephalus community. Together, these data can help drive changes that improve care for everyone living with hydrocephalus.
Join HAPPIER today: hydroassoc.org/join-the-hydrocephalus-patient-registry!

Hydrocephalus affects many types of individuals, and ventriculoperitoneal (VP) shunts are still the most common treatment method. Even with all of the progress and new ideas over the years, shunt failure still remains a major issue in the hydrocephalus community. An estimated 30-50% of shunts fail within 2 years, with valve failure accounting for approximately 15% of revision surgeries. A recent review published in World Neurosurgery examined the evolution of shunt valves, how they have improved over time, and challenges that still arise. Here’s what you need to know:

Brief History

Early attempts to relieve pressure buildup involved mechanisms like skull punctures and external drains that often resulted in infection or overdrainage. Then in the 1960s, subcutaneous reservoirs – surgically implanted devices that can access body cavities or blood vessels for drainage – allowed doctors to remove cerebrospinal fluid (CSF) manually which seemed ideal but still presented many challenges. They required frequent tapping and had a high risk of infection.

A breakthrough emerged when valves were added to shunt systems because they allowed for more control over CSF drainage with a reduced risk of infection.

The Evolution of Shunt Valves

*Correction to the video: Anti-siphon devices and gravitation valves were first introduced in the 1970s-1980s.

First-Generation Valves

The first valves were created in the 1950s and 60s. They were very simple and acted as gatekeepers of CSF. When pressure in the brain reaches a specific, predetermined value, the valve opens to release fluid — and closes again when the pressure drops. These valves have fixed differential pressure, meaning the pressure required for the valve to open and release CSF cannot be adjusted. Some examples of first-generation valves include:

• Silt valves: CSF drained through slits in the silicone tubing; prone to wear and degradation over time.

(doi.org/10.3390/jcm10061210)

• Miter (duckbill) valves: CSF drained through simple flaps that opened with pressure; degraded quickly.

(https://minivalve.com/valve-school/duckbill-valves-how-they-work/)

• Diaphragm valves: CSF drained through flexible membranes that cracked or wore out with repeated use.

• Ball-in-cone valves: CSF drained through springs and balls that opened under pressure; much more reliable and still a foundation for modern valves.

(doi.org/10.3389/fvets.2024.1435982)

The main challenges that arose in first-generation valves included problems like hysteresis (delayed response), overdrainage with everyday movements–something as simple as sitting up, as well as no way to adjust settings after a surgery. 

Second- and Third-Generation Valves

• Anti-siphon devices: First introduced in the 1970s, these were designed to fix the issue of overdrainage when standing up or performing other basic activities.

(https://mriquestions.com/shuntsdrains.html)

• Gravitational valves: Developed in the 1980s and 90s, they utilized tiny weighted balls that shifted with body position, and helped prevent overdrainage from simple movements like standing up.

(doi.org/10.1080/17434440.2020.1837622)

• Programmable valves: Emerging in the 1980s, these allowed doctors to adjust the valve’s opening pressure non-invasively (typically using a magnetic device). Unlike the fixed settings of first-generation valves, this meant patients didn’t need another surgery every time adjustments were required.

(https://www.bocaradiology.com/shunt.html)

• Flow-reducing devices: Created in the late 20th century, these devices smooth out sudden pressure spikes from actions like sneezing, coughing, or standing up, which first-generation valves didn’t have the power to do. 

(Medtronic)

These innovations make valves more flexible and safe, but also more complicated. 

Why Valves Still Fail:

• Wear and tear of material, like silicone and springs, that cause structural issues to the valve, potentially resulting in underdrainage or overdrainage.

• Blockages due to cell and protein buildup inside the valve.

• Magnetic fields from MRI’s or other environments that cause valve settings to change (especially common in older programmable valves).

• Handling damage during surgery or trauma after implantation.
• Difficulty in picking the right valve and setting for each person because hydrocephalus cases are incredibly unique.

Patient-Specific Challenges

It can be very difficult to find the “perfect” valve for a hydrocephalus patient because there are many factors that affect its functionality. The right valve depends on age, condition, CSF production and flow rates, and even skull shape.

Looking Ahead

Researchers are currently exploring new ideas:

• Focused ultrasound to non-invasively clear tissue and debris from valves to avoid shunt blockages (check out our Emerging Tech: Focused Ultrasounds blog here).
• Cranial implants to hide the common valve bump and reduce scalp breakdown (e.g., InvisiShunt® by Longeviti).
• More durable material and better designs that are less prone to failure.
• Smart shunts that monitor pressure continuously and adjust drainage automatically (check out our Emerging Tech: Smart Shunts blog here).
• Flushing devices to clear catheter holes to restore, increase, or maintain flow (e.g., ReFlow by Anuncia Medical).
• Minimally invasive treatments to avoid the need for traditional brain surgery (e.g., eShunt® System by CereVasc).

Even though shunt valves have come a long way, the perfect solution is still not here – yet. Nonetheless, it is critical to understand how shunt valves work and why they can fail to help patients and families make informed decisions and advocate for themselves. Continued research is coming closer to improved valves that will last much longer, respond better, and work more reliably for people living with hydrocephalus.

Pregnancy is a life-changing journey filled with excitement and questions—and for individuals living with hydrocephalus, it can come with added layers of uncertainty. Whether you’re newly diagnosed or have lived with hydrocephalus for years, you may wonder how your condition—and any treatments like a shunt or endoscopic third ventriculostomy (ETV)—might impact pregnancy, delivery, and postpartum recovery. 

The good news? Many individuals with hydrocephalus have healthy pregnancies and deliver healthy babies. With proper planning, medical support, and open communication with your healthcare providers, a safe and joyful pregnancy is possible. 

Can You Get Pregnant If You Have Hydrocephalus?

Yes. Hydrocephalus does not impact fertility, and many people with hydrocephalus become pregnant without complications. However, your individual medical history, including the type of treatment you’ve had (such as a shunt or ETV), will help guide your care plan. 

If you’re considering pregnancy, talk with your neurosurgeon and obstetrician ahead of time so they can coordinate your care from the beginning.

Pre-Pregnancy Planning: Things to Consider

If you’re thinking about starting a family, here are a few important steps to take: 

• Schedule a pre-conception consultation with your neurosurgeon and OB-GYN. 
• Discuss your surgical history, including any shunt placements, revisions, or ETV/ETV-CPC procedures. 
• Review your medications to ensure they’re safe during pregnancy and breastfeeding. 
• Monitor your symptoms and understand your baseline so you can recognize any potential changes early. 
• Gather key details about your shunt, including the type, valve (programmable or fixed), setting, and configuration—such as a ventriculoperitoneal (VP) or ventriculoatrial (VA) shunt. Keeping this information organized can be especially helpful when coordinating care. HA’s mobile app, HydroAssist®, can help you store these details in one place and upload relevant imaging, making it easier to share a clear snapshot of your medical history with your neurosurgeon and care team. 

Hydrocephalus in the Baby: Is It Genetic?

It’s a common concern: “Will my baby have hydrocephalus, too?” In most cases, hydrocephalus is not inherited. While there are rare genetic forms—often associated with conditions like spina bifida or aqueductal stenosis—most people with hydrocephalus do not pass it on to their children. A genetic counselor can help assess any potential risks based on your medical history.

Pregnancy: What to Expect

Pregnancy causes changes in your body—including increased blood volume, fluid retention, and pressure shifts—that may affect individuals with hydrocephalus differently. Most people don’t experience shunt or ETV complications during pregnancy, but it’s important to know what to look for.

Symptoms to Watch For

Some symptoms of increased intracranial pressure can overlap with typical pregnancy discomforts. Contact your medical team if you notice: 

• Persistent or worsening headaches 
• Vision changes (blurred or double vision) 
• Vomiting not related to morning sickness 
• Trouble with balance or coordination 
• Extreme fatigue or unusual sleepiness 

Regular check-ins with your neurosurgeon during pregnancy can help monitor your condition and provide peace of mind.

Emergency Plan 

It’s helpful to create an emergency plan before labor. This should include: 

• A list of your symptoms and medical history 
• A summary of your shunt or ETV status 
• Contact information for your neurosurgeon 
• Instructions for what to do if you experience signs of increased intracranial pressure 

Share this plan with your obstetric team and have it on hand during labor and delivery, especially in hospitals unfamiliar with hydrocephalus.

Imaging Considerations

In some cases, imaging may be needed to evaluate a headache or a possible shunt or ETV complication. MRI is generally preferred during pregnancy and is considered safe, particularly in the second and third trimesters. CT scans are typically avoided during pregnancy due to radiation exposure and are usually only considered in life-threatening situations when an MRI is not available. Your care team will carefully weigh the risks and benefits and choose the safest option for you and your baby.

Delivery Considerations

Both vaginal birth and cesarean section (C-section) are possible for individuals with hydrocephalus. Your delivery plan will depend on your specific situation: 

• Shunt placement matters. If you have a ventriculoperitoneal (VP) shunt, care may be taken to avoid pressure on the abdomen. 
• Anesthesia planning is key. Spinal or epidural anesthesia is usually safe, but should be discussed with your neurosurgeon and anesthesiologist ahead of time. If you have a lumboperitoneal (LP) shunt, additional planning may be needed, as the shunt’s location can affect decisions around epidural or spinal anesthesia. Your anesthesiologist and OB-GYN should be fully aware of your shunt configuration. 
• Multidisciplinary care is ideal. Your OB-GYN, neurosurgeon, and anesthesiologist should work together on your birth plan. 
• What does the research say? Earlier medical literature suggested a higher risk of shunt malfunction during pregnancy. However, a more recent single-center study published in JAMA Network Open found no shunt malfunctions during 85 pregnancies that went to term. The study also showed that vaginal delivery was safe and did not increase the risk of shunt malfunction. Importantly, postpartum shunt malfunctions occurred in about 6% of individuals, highlighting the need for continued symptom monitoring after delivery. 

Also, confirm whether your neurosurgeon has privileges at the hospital where you plan to deliver or can be consulted if needed. 

“I have had hydrocephalus since I was six weeks old due to aqueductal stenosis, and I have a VP shunt. I was able to have three children vaginally and had a wonderful experience with all three. 

I met with a high-risk OB in advance, even though my OB felt very comfortable supporting me through pregnancy and delivery—I just wanted to double-check. After that visit, I decided to return to my regular OB and had such a smooth experience.

What was interesting is that during all three pregnancies, I experienced migraines—which I had never had before—so it was scary not knowing whether they were migraines or related to my hydrocephalus. However, the hospital and my doctors supported me with a plan, and everything turned out alright.

I am so thankful for HA for speaking openly about hydrocephalus, which helped me feel much more confident as I began that journey 13 years ago.” -Stephanie (Buffa) Vogt

Postpartum Recovery

After delivery, keep an eye on both physical healing and hydrocephalus symptoms. Hormonal changes, fluid shifts, and sleep deprivation can sometimes mask signs of increased intracranial pressure. Be sure to: 

• Know the symptoms of shunt or ETV complications 
• Stay in contact with your neurosurgeon 
• Get rest and ask for help when you need it 

Breastfeeding and Hydrocephalus

Breastfeeding is safe with a shunt or ETV. Hydrocephalus itself doesn’t interfere with nursing. If you’re taking any medications, consult your doctor or lactation consultant to ensure they’re safe while breastfeeding.

Mental Health and Emotional Support

Pregnancy and postpartum can be emotionally intense for anyone—but especially for people managing a lifelong condition like hydrocephalus. Past medical experiences, fears of complications, or anxiety about parenting can surface during this time. 

Don’t hesitate to reach out for support. Perinatal mental health therapists, social workers, or hydrocephalus support communities can provide a safe space to talk. You are not alone in this journey.

Support from Partners and Loved Ones 

Partners and support people can play a vital role by: 

• Learning about hydrocephalus and your specific care needs 
• Helping monitor symptoms and keep a record if something feels off 
• Advocating for you in medical settings 
• Offering emotional support and practical help postpartum 

Encourage your partner or loved ones to read this article and be part of your care plan.

Questions to Ask Your OB-GYN and Neurosurgeon

Bring these to your next appointment: 

• Will my shunt or ETV affect my delivery options? 
• Should I have extra monitoring in my third trimester? 
• What symptoms should I report right away during pregnancy? 
• Are there any limits to physical activity or positioning during labor? 
• Can you and my neurosurgeon communicate about my care plan? 

Helpful Tools and Resources

Staying organized and informed can reduce stress during pregnancy. Consider: 

• Using a symptom tracker, like HydroAssist®, to monitor hydrocephalus-related symptoms 
• Keeping a printed medical summary for appointments and emergencies 
• Joining support groups, like the Hydrocephalus Association (HA) Virtual Community Network meet-ups 

You Can Have a Healthy Pregnancy with Hydrocephalus

Having hydrocephalus doesn’t mean you can’t have a healthy pregnancy or enjoy motherhood. With the right medical team, early planning, and strong support, many people with hydrocephalus go on to experience smooth pregnancies and deliveries. 

If you’re planning for pregnancy or already expecting, don’t be afraid to speak up, ask questions, and build a care team that understands your unique needs. You deserve support every step of the way. 

Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2024. We would like to thank Abhay Moghekar, MBBS, for his valuable contribution and expert input.

This article is designed to provide helpful information on the subjects discussed. It is not intended as a substitute for treatment advice from a medical professional. For diagnosis or treatment of any medical condition, consult your doctor.

We understand that attending a conference can be financially challenging. To help, we’ve developed this funding guide to assist you in identifying potential sources of financial assistance and practical strategies to reduce costs. Explore the resources below to help you join us and make connections that matter!

Practical Strategies for Individual and Family Participation

• Room Sharing: Room-sharing is a great way to reduce expenses. Reach out to community members to see if anyone is interested in sharing a hotel room.NOTE: HA does not manage or take responsibility for room-sharing arrangements.

• Consider Individual Participation: If the cost of attendance for the entire family is prohibitive, consider having one parent or caregiver attend. This participant can then share the experience and insights with the family, with the hope of enabling more members to attend future conferences. 

• Book Travel Early: Airfare rates are often lower when booked well in advance. Use price comparison tools like Google Flights, Hopper, Expedia, or Kayak to find the best deals. Booking the hotel early guarantees you’ll receive the conference room rate.  For more information on the conference hotel click here. 

• Apply for an HA CONNECT conference financial aid package: We are pleased to offer financial aid packages to individuals who wish to attend HA CONNECT, but cannot afford partial or full cost of attendance. Applications for financial aid will open in January 2026. Visit our conference financial aid page on our website for more information. 

Funding Opportunities

Flexible Spending Account (FSA)

Did you know FSA funds can be used for conference registration and transportation costs related to medical conditions? If you or your family member has an FSA, this is a great way to offset some costs. For more information, visit the IRS website. 

Grants from Local Clubs and Associations

Many local civic and charitable organizations are willing to support families and individuals attending educational events like HA CONNECT. Consider contacting: 

• Kiwanis 
• Elks 
• Lions Club 
• Rotary Club 
• The Arc 
• Easterseals 
• National Association of Councils on Developmental Disabilities 

Other suggestions: high school or college clubs, veteran organizations, hospital auxiliaries, or local churches. 

Tip: Contact local chapters or branches directly, as many grants are awarded at the community level.

Creating Your Own Opportunity

Fundraisers

• Plan a local fundraiser and invite friends, family, and community members. Share the purpose of your fundraising and express gratitude for their support. Not sure what to say when asking for support? We’ve created sample emails, text messages, and social media posts you can download to help you confidently share your fundraising goal with friends, family, and your community. 
• Ideas: bake sales, garage sales, car washes. 

Crowdfunding

• Use platforms like GoFundMe or Fundly to raise funds for conference attendance and to offset your expenses. Share your story, the purpose of attending the conference, and how it benefits your health or advocacy efforts. Promote your campaign through social media and local community groups.  

Tax Returns

• Tax season is a great opportunity to set aside funds for HA CONNECT. If you receive a tax refund, consider allocating a portion of it toward your conference expenses, such as registration, travel, or lodging.

Sponsorship from Medical Providers or Companies

• Talk to your healthcare provider, hospital, or clinic about potential sponsorship. 
• Pharmaceutical or medical device companies that produce treatments for your condition sometimes sponsor patients to attend educational conferences as part of advocacy or outreach. 

Community Support

• Place donation jars at community businesses (like coffee shops, grocery stores, or salons) with a short description of your goal. 

Airline Miles Donations

• Ask friends and family if they can donate frequent flyer miles to help with airfare costs. Many airlines have formal programs for transferring miles. 

Leverage Credit Card Rewards

• If you use a credit card with travel rewards, redeem points for flights, hotels, or car rentals. Be sure to plan ahead to maximize your rewards. 

Helpful Tools 

• Sample Grant Proposal Letter: Use our sample letter to craft a strong request for funding tailored to your needs. Download our sample grant proposal letter to attend HA CONNECT 
• Expense Calculator: Organize your travel and conference expenses with our Excel spreadsheet. Download our HA CONNECT Attendance Expense Spreadsheet. 
• LinkedIn’s Guide to Conference Grants: Reference this article for tips on finding and applying for funding. 

 Tips for Success

• Start Early: Research funding sources and application requirements as soon as possible. 
• Be Organized: Gather required documents such as proof of financial need, reference letters, and expense estimates. 
• Personalize Requests: Adapt our sample letter to reflect your unique circumstances and goals. 
• Follow-up: Stay in touch with organizations to ensure your application is complete. 

Join Us at HA CONNECT – Plan Your Path Today!

Attending HA CONNECT is a valuable opportunity to learn, connect, and grow. Don’t let financial barriers keep you from attending HA CONNECT! Start planning today by exploring these funding options and developing a strategy that works for you. 

For more information about the conference, visit hydrocephalusconference.org. 

We look forward to seeing you at HA CONNECT! 

Prior to these revisions, I never really worried about my hydrocephalus, when the next brain surgery would be, or truly knew anyone with hydrocephalus except for a family friend. When I started having frequent revisions within a short period of time, I felt alone. I didn’t have anyone in my life who understood what I was going through.

After experiencing these revisions, I learned about the Hydrocephalus Association (HA). Through HA, I started a WALK for the Jersey Shore community and became a Community Network Leader for New Jersey. Slowly, I started to find my community and where I felt like I belonged. When COVID began, we started having meetings virtually, and I gradually started to build friendships with others who have hydrocephalus like me.

In 2022, I attended my first National Conference on Hydrocephalus, HA CONNECT, in Austin, Texas. At HA CONNECT, I built stronger relationships with those I already knew from the WALK community and virtual meetings. It was an experience that I’ll never forget because I finally had the opportunity to meet my virtual friends in person, like Genesis, who has become one of my best friends. If it wasn’t for HA CONNECT, I don’t know when we would have met. Our bond has grown tremendously. I don’t remember a time when we didn’t know each other. I truly don’t know what I would do without her.

During this conference, I also got to grow my bond with Lindsey, a fellow WALK chair, her daughter Taelley, who has hydrocephalus, her two siblings, and Lori, who is also a WALK chair. I first met Lindsey and Lori during WALK training, but getting to know them better and spending time together at the conference is what truly created lasting memories—ones I will never forget.

When we planned our trip to attend HA CONNECT in 2024 in Tampa, Florida, we automatically knew we wanted to plan excursions together before attending the conference to spend more time with one another. Our friendship and bond are so strong that Lindsey, the kids, and I visited Lori and her husband, Mitch, last Summer, and we already have plans for our next adventure together. Lindsey, Lori, and I have built such a strong bond that we can have open conversations about anything with no judgment.

During the HA CONNECT 2022, I also got to meet Tina for the first time, and from the moment we met, we were linked forever. Not only do we both have hydrocephalus, but we also live in the same state, which has allowed us to spend time together more often, not just at the conference.

HA CONNECT is truly like an enormous family reunion. Every two years, you get to see the friends you’ve made, and you pick up where you left off. It’s as if no time has passed at all! If you have never been to an HA’s National Conference before, you will leave with lifelong memories and friendships. Being in a place where everyone understands what you’ve been through is an amazing feeling. I don’t know where I’d be if it weren’t for HA CONNECT! I’m looking forward to the 19th National Conference on Hydrocephalus this summer in Indianapolis, Indiana!

In our previous article, Learning the Brain: Neuroanatomy Basics for Understanding Hydrocephalus, we discussed the anatomy of the brain and what happens to the brain in hydrocephalus. But one thing that is important to know is where all of this is happening and why. Oftentimes, you’ll hear your ventricles being referred to as “lateral”, “third”, “fourth”, or even “aqueduct”. This can be confusing when you’re trying to figure out where in your brain these different areas are, and how it relates to hydrocephalus treatment. The goal of this article is to highlight the difference between each ventricle, their locations, and their importance to hydrocephalus.

The Ventricles and the Production of CSF

Inside your brain, you have a series of ventricles, or fluid-filled cavities. These ventricles are filled with cerebrospinal fluid (CSF) that is constantly moving and working to cushion the brain and remove toxins. The CSF flows in one direction, creating a type of current that surrounds your brain and spinal cord. Because the CSF flows in one direction, this means that if there is a blockage or interruption, it creates a buildup like a traffic jam. It is important to note that this traffic jam can occur in different locations in your ventricles depending on the cause. This buildup of CSF is known as hydrocephalus.

When you’re learning about hydrocephalus and treatment options, you may hear someone talk about the different ventricles and nearby structures. These structures together are known as the ventricular system. If we look at the journey of CSF through the body as a commute on a road, it starts in the lateral ventricles (a connected pair with one half on each side of the brain) and includes the choroid plexus. The choroid plexus is a small piece of tissue that floats in the lateral ventricles. It has many roles in the ecosystem of the brain, but its primary function is the production of CSF.

After being produced in the lateral ventricles, the CSF flows around from the middle of the brain to the bottom, and through the third ventricle and lastly fourth ventricle. The third ventricle is a narrow space that sits along the midline, or the invisible line that separates the brain into two halves. The third ventricle acts as a meeting point for the CSF coming from both the lateral ventricles. CSF flows out of the third ventricle through the aqueduct to the fourth ventricle.

The fourth ventricle, downstream of the third, sits right above the spinal cord and is where the CSF exits the ventricular system to flow around the outside of the brain or around the spinal cord to eventually be absorbed.

Treating Hydrocephalus in the Ventricles

There are many different types of hydrocephalus, and each patient’s situation is different. With this in mind, there are two primary treatments that involve intervention within the ventricles: shunts and endoscopic third ventriculostomies (ETVs).

Watch the video below to learn more about how hydrocephalus is treated:

To recap the video, shunt systems work by placing a small, flexible tube called a catheter into one of the lateral ventricles to drain excess CSF to another part of the body. The fluid is often sent to the abdomen or heart because the body can absorb it there safely.

Alternatively, in addition to or instead of a shunt, an endoscopic third ventriculostomy (ETV) is performed. An ETV is a procedure in which the surgeon creates a small hole in the third ventricle to bypass a buildup or blockage and increase the flow of CSF out of the ventricular system. This is done with an endoscope, or a camera on the end of a long, flexible tube.

Additionally, some patients that are eligible to receive an ETV may also have a choroid plexus cauterization (CPC) performed. As mentioned above, the choroid plexus is located in both lateral ventricles, where its primary job is to constantly produce CSF. Due to its productive nature, some surgeons find thatsmall parts of the choroid plexus (called cauterization or coagulation), alongside the ETV can be an effective treatment for certain patients. CPC can help by reducing the amount of CSF the brain makes, aiming to prevent fluid from building up too quickly.

While every person with hydrocephalus may have differences in severity and ventricle size, the overall structure and location of the brain’s ventricles is the same for most people. To recap, the two lateral ventricles are on each side of the brain, and they both flow into a single ventricle called the third ventricle. The CSF that ends up in the third ventricle will continue flowing down towards the spinal cord through the aqueduct and fourth ventricle, and from there will either travel up and around the outside of the brain, or down and around the spinal cord.

This video from 2-Minute Neuroscience provides a brief summary of what we have covered in this article:

Why This Matters

Understanding how CSF moves through the ventricles helps explain how hydrocephalus and its treatments work. When this flow is blocked, or fluid builds up faster than it can be absorbed, pressure can increase and symptoms can develop. Treatments like shunts and ETVs are designed to restore balance by redirecting fluid or creating a new pathway for it to flow. This overview of the ventricular system is based off our current understanding of CSF dynamics, but our understanding of CSF flow grows as ongoing research in this area of medicine continues.

If you’d like to explore this topic further, check out our related article: Learning the Brain: Neuroanatomy Basics for Understanding Hydrocephalus

The Hydrocephalus Association is proud to announce the recipients of our 2025 Innovator Award, which provides seed funding for bold, early-stage ideas with the potential to transform hydrocephalus care. These projects reflect our Community Research Priorities, particularly the need for less invasive treatments, better diagnostic tools, and research that can improve quality of life for people living with hydrocephalus.

Dr. Nathaniel Fried

Professor of Physics and Optical Science at University of North Carolina at Charlotte

Image-Guided Laser Clearance of Occluded Ventricular Catheters for Treatment of Hydrocephalus

Shunt blockages are the most common cause of shunt failure. Dr. Fried’s team is developing a tiny, flexible laser system paired with a miniature endoscope that could be used to safely clear blockages from shunt catheters. If successful, this approach could allow neurosurgeons to restore shunt function without replacing the entire system.

Dr. June Goto 

Associate Professor of Surgery at Cincinnati Children’s Hospital Medical Center

Choroid Plexus Targeted Treatment for Hydrocephalus

Hydrocephalus in newborns often requires multiple surgeries because shunts can fail many times over a child’s life. Dr. Goto’s team is developing a new, one-time therapy that could lower the amount of fluid the brain makes. Using a safe, virus-based delivery method, her team aims to target the part of the brain that produces cerebrospinal fluid called the choroid plexus with the goal of reducing excess CSF build-up in the brain and therefore reducing the need for surgery.

Dr. Marwan Osman

Research Faculty at Yale University

Addressing Paenibacillus-Associated Neonatal Sepsis and Post-Infectious Hydrocephalus in East Africa (PANS-PIH)

In parts of East Africa, newborn infections can lead to post-infectious hydrocephalus (PIH), a major cause of disability and death. Many hospitals lack the tools needed to identify the bacteria responsible, particularly the Paenibacillus bacteria, which is a rising cause of neonatal sepsis. Dr. Osman’s project focuses on building long-term diagnostic capacity in Uganda by training laboratory staff, improving testing systems, and introducing a rapid, low-cost diagnostic tool. The project will also analyze bacterial genetics to help doctors worldwide understand antibiotic resistance.

Dr. Stavros Taraviras

Professor of Physiology at Medical School, University of Patras

Investigating the Use of Focused Ultrasound as a Gene Delivery Approach Targeting Ependymal Cells

Gene therapy holds promise for hydrocephalus, but getting treatments into the brain safely is a big challenges. Dr. Taraviras is exploring the use of focused ultrasound (FUS) to deliver therapeutic genes to the cells lining the brain’s ventricles. Using mouse models of hydrocephalus, his team will test whether this approach could help repair damaged cells or correct harmful genetic pathways that contribute to hydrocephalus.

A Future Powered by Innovation

These projects reflect the creativity, urgency, and passion driving hydrocephalus research today. By investing in early-stage ideas, the Hydrocephalus Association aims to accelerate progress toward safer treatments, better diagnostics, and improved quality of life for everyone affected by hydrocephalus.

Join Us in Celebrating

As we celebrate this year’s award recipients, we also want to acknowledge all researchers who submitted proposals. Your dedication to improving the lives of those affected by hydrocephalus is deeply valued, and we encourage you to keep pushing your ideas forward. With continued innovation, we can move closer to better options and better outcomes for our community.

Before beginning your Hydrocephalus Association (HA) Scholarship application, we encourage you to review the program details so you’re familiar with the requirements and eligibility criteria. With a little preparation and organization, you can put forward a strong and thoughtful application. The tips below will help you get ready.

Important Deadline:
The 2026 Scholarship Application closes on April 15, 2026, at 11:59 PM ET.
Late submissions will not be accepted, and no exceptions will be made, so please plan accordingly to complete your application on time. 

Click here to learn more about eligibility, criteria, and frequently asked questions.

Tips for a Smooth and Successful Application

1. Double Check All Required Materials

The scholarship application is a Google Form and, therefore, must be completed and submitted in one session. Before opening the Google Form, review the application instructions carefully and confirm that you have all the required materials ready to upload. Because you must complete every section in one session, having everything prepared ahead of time is essential 

Submitting a complete and accurate application the first time helps it move smoothly through the review process. 

 2. Start the Application Process Early and Plan Ahead

Even though the Google form must be completed in one sitting, you can—and should—prepare your materials well in advance. Because the application cannot be saved and returned to later, plan ahead by setting aside enough uninterrupted time, ensuring you have a stable internet connection, and keeping your drafted essay responses open for easy copying and pasting. Starting early helps you avoid last-minute stress, gives you plenty of time to gather required documents, and reduces the chance of technical issues. 

 3. Prepare Essay Question Answers in Advance

Because the scholarship application is hosted in Google Forms,  the application cannot be saved and returned to later, so if you close the application window before submitting, all progress will be lost. Preparing ahead of time is the best way to avoid stress and ensure your answers are thoughtful and complete. 

Before you begin the application, take time to read through all the essay questions and instructions. This helps you understand what information you’ll need and prevents you from rushing through important sections. 

We highly recommend drafting your responses in a Word or Google document first so you can revise, edit, and save your work before starting your application. 

Preview the essay questions here. 

4. Use Clear, Specific Examples in Your Essays

Specific experiences make your responses more meaningful and memorable. Share real stories of challenges you’ve faced, accomplishments you’re proud of, or moments of growth. These examples help the committee understand your journey and what has shaped who you are today. 

5. Provide as Much Information as Possible

The Scholarship Committee values detailed, thoughtful answers. When in doubt, include more information rather than less. Use your responses to paint a full picture of your experiences, achievements, challenges, and goals.  The more context you provide, the better the scholarship committee can understand your journey and what makes you a strong candidate.   

6. Obtain Your Diagnosis Verification Early

Diagnosis verification can take time, especially when requesting documentation from healthcare providers. Reach out as early as possible to avoid delays and ensure your paperwork meets all application requirements. Starting this step ahead of time helps prevent last-minute stress and keeps your application on track. 

7. Contact Your Recommender Early

Your letter of recommendation is an important part of your application, so reach out to your recommender well in advance. Giving them extra time ensures they can write a strong, thoughtful, and personalized letter on your behalf. 

Encourage your recommender to include examples and insights that highlight your strengths, character, and accomplishments. 

All recommendation letters must be emailed directly from the recommender to:
 scholarship@hydroassoc.org. 

8. Who Makes a Good Recommender?

Choose someone who knows you well, can speak to your strengths, and has seen your growth over time. Strong recommenders include: 

• Teachers or professors who can speak to your academic strengths and work ethic 
• Coaches who can highlight dedication, leadership, perseverance, and teamwork 
• School counselors or advisors familiar with your goals and personal journey 
• Supervisors or employers who can describe your responsibility, reliability, and character 
• Mentors or volunteer coordinators from community activities or programs 

The person recommending you cannot be a relative, as they cannot provide the objective perspective required for the scholarship committee. 

9. Follow All Instructions Carefully

Be sure to: 

• Review all directions thoroughly 
• Ensure every required field is complete 

The application cannot be submitted unless all required fields are filled in. Google Forms will display a notification if any required question is left unanswered. Review these prompts carefully so you don’t miss anything essential. 

10. Proofread Before You Submit

A careful final review can improve clarity and help you catch small mistakes before submitting your application. Try: 

• Reading your essays out loud 
• Using spell check 
• Asking someone you trust to review your responses 

Taking a few extra minutes to proofread ensures your application is polished and professional. 

11. Expect to receive an editable link after submission

After you submit your application, you will receive an automated email from Google Forms with a link that allows you to edit your responses if needed. This option is only available after your initial submission. 

12. Save Copies of Everything

Make sure to keep copies of all important materials, including: 

• Your essay responses 
• Your confirmation email 

Having these on hand is helpful if you need to make edits or reference your submission later. 

13. Ask Questions if You’re Unsure

If any part of the application is confusing or unclear, we encourage you to reach out for help. You can email us at: scholarship@hydroassoc.org. 

We’re here to support you throughout the process.

Final Tips for a Strong Scholarship Application

Submitting a strong scholarship application starts with preparation, attention to detail, and giving yourself enough time to put forward your best work. We encourage you to start early, stay organized, and reach out if you have any questions along the way. 

We look forward to receiving your application and learning more about your journey, goals, and achievements! Wishing you the very best of luck! 

The Hydrocephalus Association (HA) is honored to recognize the extraordinary generosity of Tessa van der Willigen and Jonathan Walters, and David and Lisa Browdy, whose $100,000 commitment will fund two additional Neuropsychology and Cognition Awards over the next two years. Their investment underscores a powerful belief in the essential role this research plays in improving the lives of people living with hydrocephalus and advancing HA’s mission.

Launched in 2024, the Neuropsychology and Cognition Award was established to expand research into the quality-of-life dimensions of hydrocephalus across all ages. This award supports innovative studies focused on developing and refining neuropsychological and cognitive assessment tools that are vital to understanding how hydrocephalus affects thinking, learning, behavior, emotional health, and day-to-day functioning. These insights are critical not only for clinicians and researchers, but also for families seeking clearer guidance and better long-term outcomes.

Tessa and David played a pivotal role in bringing this award to life. As longtime HA Research Committee Co-Chairs—David from 2010–2023 and Tessa from 2018–2024—they championed the need to address the often-overlooked cognitive and psychological impacts of the condition. As parents of children living with hydrocephalus, they know firsthand how vital this research is for improving quality of life, strengthening supports, and shaping care that addresses the whole person. Their commitment was further reinforced by HA’s community research priorities, which highlighted an urgent need for expanded quality-of-life research.

Their continued commitment enables scientists to pursue cutting-edge studies that can lead to earlier identification of cognitive challenges, better monitoring of changes over time, and more personalized and effective interventions. These awards are helping to build a future where individuals with hydrocephalus can thrive—with the tools, information, and care plans needed to support every aspect of their well-being.

We extend our deepest gratitude to Tessa, Jonathan, David, and Lisa for their remarkable leadership and generosity. Their belief in this work is ensuring that cognitive and neuropsychological outcomes receive the attention it deserves, bringing hope, clarity, and improved quality of life to countless individuals and families.