Advocating for Research
The Hydrocephalus Association is leading a grassroots effort to raise awareness of hydrocephalus among policymakers. Building on our recent successes — the first-ever National Institutes of Health (NIH)-sponsored research workshop on Hydrocephalus in 2005 and the passage of our first Congressional Resolution calling for more support of hydrocephalus research in 2007 — we are pushing for supportive language of hydrocephalus research in the 2008 Labor Health and Human Services Appropriations Bill, which includes the NIH budget.
Specifically, the report language encourages NIH to “…significantly strengthen funding for hydrocephalus research along with actively soliciting grant applications based on the findings from the workshop. The Committee also encourages National Institute of Neurological Disorders and Stroke (NINDS) to seek opportunities to collaborate with other institutes and offices at NIH… [and] to support research collaboratively in epidemiology, pathophysiology, disease burden and improved treatment for hydrocephalus.”
Report language is a key avenue for members of Congress and their constituents to influence the ways federal agencies, including the NIH, spend federal funds. Report language does not have statutory force, meaning departments and agencies are not legally bound by their directives. These documents do, however, express congressional intent and executive branch departments take them seriously.
Our grassroots movement — your calls, e-mails and letters to your legislators — has been critical to our legislative success. We encourage you to keep up the good work and help us seal our latest legislative victory: moving the 2008 Appropriations Bill with our report language attached through the combined House and Senate Conference. With the help of Advocacy Leadership Circle, lend your voice, your letters and your e-mails to tell Congress that this Appropriations Bill with the report language is important to you.
Future Plans
Reaching Out Beyond National Institutes of Health
Until now our primary advocacy efforts have focused on gaining support in Congress for increased NIH funding and building awareness of hydrocephalus. We are now beginning to reach out beyond NIH. Understanding that solid, robust data on the prevalence and incidence of hydrocephalus is vital to making our case, the Association will invite officials at the Centers for Disease Control and Prevention (CDC) to embark on a proactive strategy to collect statistics on the condition. Due to the high number of head injuries suffered by American troops in the Iraq war, we are reaching out to the Department of Defense to explore avenues for collaboration on research on hydrocephalus. And, we will sit down with officials from the Department of Veterans Affairs (VA) to see if we can work together on a normal pressure hydrocephalus (NPH) initiative for veterans over 50 years of age.
Recent Successes
2007 Congressional Resolution H. Con. Res. 74
On February 27, 2007, the U.S. House of Representatives, with overwhelming bipartisan support, passed H. Con. Res. 74, which calls for additional research funding for hydrocephalus. Lead sponsor Representative Mike Thompson (D-CA) and House Speaker Nancy Pelosi (D-CA), along with Representatives Henry Waxman (D-CA), Frank Pallone (D-NJ), John Sullivan (R-OK), and George Miller (D-CA), spoke eloquently in support of this motion. The complete congressional transcript can be read here.
NIH-Sponsored Hydrocephalus Research Workshop in 2005
In September of 2005 the NIH sponsored their first-ever workshop focused on hydrocephalus research. Titled “Hydrocephalus: Myths, New Facts, Clear Directions” this 2 1/2-day workshop brought together 160 experts to challenge the existing dogma and mythology surrounding hydrocephalus. The group worked to identify critical gaps in research and clinical treatment, develop strategies for improving the level of knowledge and inspire new collaborative opportunities.
This workshop came about through the combined efforts of BrainChild Foundation, STARS, the National Institute of Neurological Disorders and Stroke (NINDS) and other offices and institutes within the National Institutes of Health. Click here to read more about this collaborative effort. Read more about this collaborative effort.
NIH Workshop Report Published in Peer-Reviewed Journal
A ground-breaking paper summarizing the findings from the 2005 NIH Workshop “Hydrocephalus: Myths, New Facts, Clear Directions” has been published in the November 2007 peer-reviewed Journal of Neurosurgery: Pediatrics. This Journal has been kind enough to designate the paper open access. Click the link to read "Priorities for hydrocephalus research: report from a National Institutes of Health-sponsored workshop".