Talk 17: Current State of Hydrocephalus in the United States of America Talk 18: A Sustainable World for Inclusive Services for Persons with Spina Bifida and Hydrocephalus

Amanda Garzon

Hydrocephalus Association, USA

Background: There are over 1 million Americans living with Hydrocephalus in the United States, from infants to seniors. Anyone at any age can develop the condition. Often thought of as a pediatric condition, today in the U.S. there are more adults living with Hydrocephalus than children. There is a crisis in care, however, as many adultfocused neurosurgeons and neurologists lack the needed knowledge and/or motivation to manage adult patients.

Methods: The Hydrocephalus Association works on two fronts to change the future of Hydrocephalus – through an aggressive research program and through direct patient education, advocacy, and support. Our Research program funds innovative, high impact research to improve diagnosis and management of the condition, with the ultimate goal of preventing its development. On the patient-side, we continue to serve as the trusted source of information on Hydrocephalus.

Results: HA supports two clinical research networks with institutions in the U.S., Canada, and Great Britain, as well as a basic and translational research network with scientists from over 129 countries. HA has funded 11 compounds that could prevent or improve the treatment of Hydrocephalus. Our clinical research networks have reduced shunt infections by 36%. Recently, our adult-focused network was awarded a $14 million grant from the National Institutes of Health to study the efficacy of shunting in seniors diagnosed with NPH.

Conclusion: Truly impacting the future of Hydrocephalus requires an aggressive strategy rooted in a partnership with medical professionals, industry partners, emerging scientists, commercial innovators, government, and, of course, patients and their loved ones.