National Health Council — Voluntary Health Agency Guide

Hydrocephalus Association

The mission of the Hydrocephalus Association is to provide support, education and advocacy to individuals, families and professionals affected by the chronic neurological condition of hydrocephalus. The Association provides one-on-one phone support to those facing a diagnosis, trying to understand treatment options or struggling with issues of living with this chronic condition. It educates patients and families through published materials and through its national conference every two years. The Association helps individuals find medical professionals who treat hydrocephalus in their local area. It advocates nationally for research to improve treatment and find a cure. The Association encourages young researchers to focus on hydrocephalus through an annual Resident’s Prize, and it rewards achievement in young adults with hydrocephalus with seven annual scholarships for higher education. It works to raise national awareness through the press and through congress. The Association, founded in 1983, serves a community of over 25,000 in the U.S. and abroad, answering about 600 inquiries every month. The Association has a staff of six, is governed by a sixteen-member board of directors and advised by a medical advisory board of twenty-one prestigious clinical and research professionals dedicated to improving treatment for hydrocephalus.

About the condition(s):

Hydrocephalus is a chronic neurological condition characterized by an abnormal accumulation of fluid — cerebrospinal fluid or CSF — within spaces called ventricles inside the brain. Hydrocephalus is commonly treated by a neurosurgeon who surgically places a shunt to divert fluid from the brain to another part of the body where the fluid can be absorbed. More common than one might think, hydrocephalus affects about a million Americans in every decade of life. One in every thousand babies is born with hydrocephalus, and it is the most common reason for brain surgery in children. There is no known cure. Even after treatment, many people face repeated surgeries and diminished quality of life. In adults, this reversible dementia and gait disorder often goes undiagnosed and untreated. Medical costs in the U.S. exceed $1 billion per year.