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 $17 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

Looking Back…Moving Forward: Mentoring the Future Voice of Hydrocephalus

By JennBechard | November 27, 2013

Jennifer Bechard, the Hydrocephalus Association’s Teens Take Charge mentor and Education and Support Manager, shares her views on growing up with hydrocephalus and mentoring the future voice of hydrocephalus through her work with the teen and young adult community.

Looking Back…Moving Forward: A Trusted Source for Information

By JennBechard | November 20, 2013

As the Hydrocephalus Association continues its interview series commemorating our 30th anniversary, Tammy Knight shares the value of support and trusted information for parents and individuals.

Looking Back…Moving Forward: Building Bridges Between Pediatric and Adult Hydrocephalus

By Amanda Garzon | November 13, 2013

As the Hydrocephalus Association continues our 30th year anniversary commemoration, Dr. Marion “Jack” Walker, pediatric neurosurgeon, Primary Children’s Medical Center, Salt Lake City, Utah, reflects on his 37 years of service to the hydrocephalus community.

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