By Amanda Garzon, Communications and Marketing Manager and Ashly Westrick, Research Manager at the Hydrocephalus Association.
The Hydrocephalus Association (HA) is proud to be a member of Research!America. HA is a charitable organization dedicated to eliminating the challenges of hydrocephalus by stimulating research, as well as helping people who are affected by this condition through education, support, and advocacy initiatives. HA views research as a critical part of our mission.
Hydrocephalus is a condition characterized by the abnormal accumulation of cerebrospinal fluid within cavities of the brain. Nearly one million Americans – including children, seniors, and even veterans – are living with hydrocephalus today. There is no cure for hydrocephalus. The predominant treatment option for the disease is the implantation of a shunt through brain surgery – a device invented more than fifty years ago. The shunt has the highest failure rate of any implanted medical device, with half of all shunts failing within the first two years. A patient living with hydrocephalus is likely to undergo multiple brain surgeries in their lifetime.
Hydrocephalus is a little known, yet complex condition. It is not only difficult to understand, it is also hard to treat. More research is imperative to understanding the root causes, diagnosis, treatment and management of hydrocephalus. Yet like many other lesser-known diseases, it is hard to attract research funding for hydrocephalus. Sequestration only further reduces the amount of funding available, reducing new research grant initiatives, threatening current research initiatives, and potentially causing the loss of years of valuable research and data.
To address these challenges, HA has launched an aggressive research initiative and a corresponding funding and advocacy campaign. The goal of the research initiative is to stimulate the research ecosystem around hydrocephalus, raising the profile of the condition, and cultivating quality investigators and grant requests to the NIH. HA has also been a critical coordinator of the hydrocephalus research community by hosting research conferences and NIH-sponsored workshops. As an association, we also undertake advocacy activities to continue to raise awareness for the need for continued research funding through grassroots calls-to-action, meetings with key Congressional, Administration, and military representatives.
As a relatively small association, our membership in Research!America allows us to raise our voice with a larger community and strengthen our advocacy efforts through numbers. Even with the difficult funding environment and challenges, HA is dedicated to encouraging and funding innovative, timely and important research that will ultimately lead to a cure for hydrocephalus.