Hydrocephalus Advocacy

Overview: Strategy

The Hydrocephalus Association’s advocacy strategy spans a broad range of activities from local, grassroots awareness efforts such as our WALK program, to state level efforts to establish hydrocephalus awareness days/months, to our federal efforts which focus on research programs at the National Institutes of Health (NIH) and legislation with Congress. Our primary advocacy goal is to assure that the federal government is investing adequate funds to accomplish the following:

HA organized Hydrocephalus Advocacy and Awareness Day, May 2006

  1. To understand the breadth and depth of impact of hydrocephalus on our people;
  2. To make funding hydrocephalus research for improved treatments and cures a priority;
  3. To support those affected with hydrocephalus with appropriate programs.

These goals require targeted awareness campaigns to assure that decision makers understand that hydrocephalus is a condition that affects a broad array of people, is not cured with the insertion of a shunt, and is a growing problem with significant burden on our people and the economy.

HA started its awareness and advocacy back in May 2006 when it organized first ever hydrocephalus awareness and advocacy on Capitol Hill.  HA trained more than 120 members from its 2006 conference and then visited 98 members of Congress to tell their stories and ask for more support for hydrocephalus research.

The most significant government bodies that need to be influenced by our advocacy work are NIH and Congress.

History and Impact

We started our advocacy efforts back in 2004 when we put the wheels in motion for the first NIH sponsored workshop on hydrocephalus in September of 2005. The workshop, entitled “Hydrocephalus: Myths, New Facts, Clear Directions”, lasted 2 1/2-days and brought together 160 experts to challenge the existing dogma and mythology surrounding hydrocephalus. Workshop participants identified critical gaps in research and clinical treatment, developed strategies for improving the level of knowledge and inspired new collaborative opportunities.

This workshop came about through the combined efforts of BrainChild Foundation, STARS-Kids, the National Institute of Neurological Disorders and Stroke (NINDS) and other offices and institutes within the National Institutes of Health. 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” was published in the November 2007 peer-reviewed Journal of Neurosurgery: Pediatrics. The results of this workshop and whitepaper were dramatic and are demonstrated by this graph of NIH spending on research directly related to hydrocephalus. 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“.