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 & Scientific Advisory Boards

The Hydrocephalus Association’s advisory boards provide expert guidance to the staff and Board of Directors, helping to inform strategic planning and organizational priorities. Members are selected for their deep expertise and experience, offering valuable insights that support research, clinical care, and the needs of individuals and families affected by hydrocephalus.

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

Raising Awareness on World Hydrocephalus Day

By Ines Schlegel | September 3, 2025

On September 20, the global community is coming together to celebrate World Hydrocephalus Day in support of those living with this often-misunderstood condition.

Friends of General Hospital’s Leslie Charleson Turn Grief Into Advocacy for Normal Pressure Hydrocephalus

By Ines Schlegel | August 21, 2025

Leslie Charleson, beloved for her nearly 50-year run as Dr. Monica Quartermaine on General Hospital, passed away at 79. She lived with NPH.

Building Better Devices: The Impact of the Hydrocephalus Engineering Workshop

By Samantha Lanjewar | August 15, 2025

The Hydrocephalus Association with the generous support from the Rudi Schulte Research Institute hosted their…

Was this resource helpful?

Yes
No
Thanks for your feedback!