Hydrocephalus Association

Hydrocephalus Association Our mission is to find a cure for & improve the lives of those impacted by the condition. HydroAssoc.org alone. COMMUNITY. CLARITY. CURE.
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The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, a condition defined by an abnormal, excessive accumulation of cerebrospinal fluid (CSF) within the cavities of the brain. Hydrocephalus affects over 1 million people in the U.S. Approximately 1-2 babies for every 1000 births are born with hydrocephalus, but anyone can get hydrocephalus at any time through a brain injury or infection, among other reasons, or as part of the aging process. In our effort to find a cure, HA pursues a three-pronged strategy. Hydrocephalus means a lifetime of uncertainty for the families and individuals who are confronted with a diagnosis or who are affected by the condition. Naturally, they want to learn more, to understand what the condition entails, what treatments are available, and they want to know they’re not doing this on their own. We understand this, because many of us have stood in those same shoes. To help, HA gathers together valuable resources and connects individuals to larger communities that can provide support and understanding. By providing an online library and common space for those dealing with hydrocephalus, HA works to reduce uncertainty, advance the overall hydrocephalus community, and provide as much insight as possible into what remains an often challenging and bewildering condition. Despite its broad prevalence, hydrocephalus remains a misunderstood and often hidden condition, and the general population largely remains unaware of the breadth and depth of the impact of hydrocephalus. This lack of clarity complicates diagnosis, and not surprisingly, it also results in limited funding. For example, while hydrocephalus is 30x more common that Cystic Fibrosis, it receives only 1/13th of the federal research money. HA works to educate national and state policymakers, the medical community, and the general population about the nature and extent of hydrocephalus, and to focus attention on the condition and the legislation/attention needed for individuals to overcome challenges. Our Medical Advisory Board contains leading neurosurgeons, neurologists and other medical professionals and scientists to ensure that we are providing the most current and reliable information. We work to help others see the condition for what it is, so that it can receive the consideration it deserves. Today, no cure for hydrocephalus exists, and the primary treatment – the insertion of a shunt into the brain – was developed fifty years ago and suffers from one of the highest failure rates of any surgical treatment. By focusing attention and research monies, HA works toward the ultimate end: a final cure to hydrocephalus. Little is known about the causes of hydrocephalus, but recent research offers hope that a cure is indeed possible. Already we are seeing improved diagnostic techniques. New valve designs are improving the efficacy of the shunts used to treat patients. New treatment options have opened up the possibility of a life without a shunt for some individuals. Studies in biomarkers and genetics are providing promising insights into how we might prevent the condition from occurring. This is the power that research has, and every dollar matters. The more research we can fund now, the better the scientific foundation upon which future research will build. HA supports a Strategic Research Initiative that focuses on work that will truly advance our understanding of the condition, and with that, discover its causes, improve its treatment, and help us see an end to hydrocephalus.

In adults over 60, changes in walking, memory, or bladder control may be signs of normal pressure hydrocephalus, not jus...
02/19/2026

In adults over 60, changes in walking, memory, or bladder control may be signs of normal pressure hydrocephalus, not just aging. If you’ve caught yourself saying, “Something feels off,” don’t brush it off. If these symptoms look familiar, it may be time to talk to a doctor. https://www.hydroassoc.org/normal-pressure-hydrocephalus-2/

Share this with a friend or family member. It might start an important conversation!

Join us in St. Louis for a FREE Hydrocephalus Education Day on March 7th from 9 am –12 pm CST! Spend the morning learnin...
02/19/2026

Join us in St. Louis for a FREE Hydrocephalus Education Day on March 7th from 9 am –12 pm CST!

Spend the morning learning from pediatric neurosurgeons and researchers, hearing real stories from parents and teens, and connecting with others in the hydrocephalus community 💙

Whether you’re living with hydrocephalus or caring for someone who is, this event is for you. Plus, childcare is provided!
Register today:

Join HA & WASH-U St. Louis Children's for a free morning of education, support, and networking for people with hydrocephalus and their families in St. Louis.

When puberty starts earlier than expected in a child with hydrocephalus, it can raise even more questions. If you’ve not...
02/18/2026

When puberty starts earlier than expected in a child with hydrocephalus, it can raise even more questions. If you’ve noticed unexpected physical or emotional changes and aren’t sure what they mean, or you’re preparing for the possibility in the future, you’re not alone.
Join us for a supportive webinar designed for parents and caregivers to better understand early puberty, how it’s evaluated, and how care decisions are made.
https://www.hydroassoc.org/event/webinar-precocious-puberty/

FREE Webinar: Precocious Puberty and Hydrocephalus
March 18 | 7:00–8:15 pm ET

This webinar helps parents understand precocious puberty in children with hydrocephalus, including early signs, evaluation, and treatment decisions.

Congratulations to Julia Pazniokas, MD, this year’s recipient of the Cynthia Solomon Resident’s Prize in Hydrocephalus!T...
02/16/2026

Congratulations to Julia Pazniokas, MD, this year’s recipient of the Cynthia Solomon Resident’s Prize in Hydrocephalus!
This award honors the most promising hydrocephalus-related research paper presented by a neurosurgical resident at the Pediatric Section meeting of the AANS/CNS. The prize encourages young physicians to focus their research on advancing treatment & care for individuals living with hydrocephalus.
Congratulations, Dr. Pazniokas! 🥳
Learn more: https://www.hydroassoc.org/people-view/julia-pazniokas-md/

New for HACONNECT26! We’re introducing two special add-ons to make your conference experience even more memorable:-Exclu...
02/11/2026

New for HACONNECT26! We’re introducing two special add-ons to make your conference experience even more memorable:

-Exclusive VIP Experience: Enjoy an upgraded experience with special perks throughout the weekend!

-Scientists Meet & Greet + Lab Tours (FREE, limited spots): Go behind the scenes at the Hydrocephalus Research Center at Indiana University, meet researchers, hear about current projects, and tour state-of-the-art labs.

Space is limited, so register early!
https://hydrocephalusconference.org/register/?utm_source=addons&utm_medium=social

What are your go-to tools for memory, focus, getting started, finishing tasks & staying organized? 📲📝⏰Do they help or i...
02/09/2026

What are your go-to tools for memory, focus, getting started, finishing tasks & staying organized? 📲📝⏰
Do they help or is there something more you need? Comment below! ⬇️

Meet Lindsay 👋From her first shunt at just three days old to headaches and vision problems so severe she was considered ...
02/08/2026

Meet Lindsay 👋
From her first shunt at just three days old to headaches and vision problems so severe she was considered legally blind, Lindsay’s journey has not been easy. After years of surgeries and challenges, she’s now 15 years without a shunt revision and moving confidently toward her dreams. As an HA scholarship recipient, Lindsay was able to attend college, where she assisted blind and low-vision students. That experience inspired her to pursue a career teaching students with visual impairments.
Read Lindsay’s full story and share your own journey here: https://www.hydroassoc.org/people-view/lindsay/

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