About Us

Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association (HA) is the nation’s largest and most widely respected organization dedicated to hydrocephalus.

HA funds high-impact research, provides support and educational resources for patients and caregivers, and advocates on behalf of the hydrocephalus community on key policies and legislation.

Since 2009, HA has invested over $16 million in cutting-edge research, making us the largest non-profit, non-governmental funder of hydrocephalus research in the United States.

Our Mission

HA's mission is to find a cure for hydrocephalus and improve the lives of those impacted by the condition.

Our Vision

Our vision is a world without hydrocephalus.

Learn About Our Approach and Strategy

View our 2023-2025 strategic plan.

HA Staff 2024

Board of Directors and Staff

HA’s Board of Directors and staff work together to advance our mission and create meaningful change for the hydrocephalus community. The Board provides strategic direction and guidance, while our dedicated staff brings expertise, compassion, and a commitment to serving those affected by hydrocephalus. Together, they provide invaluable support to our programs, advocacy efforts, and community outreach.

MAB

Medical Advisory Board

HA's Medical Advisory Board (MAB) was established to provide advice and guidance to the staff and Board of Directors. MAB members are selected for their medical knowledge and expertise in the diagnosis and treatment of hydrocephalus, as well as for their compassion and sensitivity to the needs of patients and their families.

newsletters

Our Printed Newsletters

Our printed newsletter includes our latest initiatives, events taking place, and information about the latest hydrocephalus research, education, and support efforts.

Annual Report

Our Annual Reports and Financials

We aim to be transparent in the use of the funds we receive. View our Annual Reports from the past 10 years, as well as our financials.

See Our Charity Ratings

We are extremely careful with the dollars you have entrusted to us, earning us high marks from charity watchdog groups for our program efficiency, public accountability and cost effectiveness. In fact, we are proud to say that in 2022, over 84% of the Hydrocephalus Association’s total operating expenses were used to support our mission of finding a cure and improving the lives of those impacted by hydrocephalus.

BLOG

The Hydrocephalus Scoop on Capitol Hill — June 2025

By Ines Schlegel | June 24, 2025

June updates on Medicaid cuts, CDMRP research funding, and telehealth bills impacting the hydrocephalus community. Make your voice heard on the Hill!

Neuroanatomy

Learning the Brain: Neuroanatomy Basics for Understanding Hydrocephalus

By Samantha Lanjewar | June 10, 2025

Neuroanatomy Basics for Understanding Hydrocephalus: A simple guide to neuroanatomy and hydrocephalus.

president, NIH cuts, hydrocephalus, research

Explainer of the President’s FY 2026 HHS Budget Proposal

By Ines Schlegel | June 5, 2025

President’s FY 2026 budget proposes major NIH cuts, agency mergers, and restructures that could reduce neuroscience and hydrocephalus research funding.

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