By Paul Gross, Chairman of the Board
I attended the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) nonprofit forum on June 1st. Of the 27 institutes that make up NIH, NINDS is the largest potential grantor in hydrocephalus research. The event is put on by the NINDS staff to allow patient advocacy organizations and research funders to get more information about how to effectively work with NINDS and the other institutes.
The day included a mix of education sessions on NIH basics, breakouts and networking sessions with NINDS program directors that are responsible for different portfolios of research across NINDS. It opened with some sobering news from NINDS Director Story Landis explaining that NIH’s budget has been cut by 1%. The major ramification of that budget cut is that fewer applications will get funded in coming years. On the positive front, Dr. Landis referred to hydrocephalus during her opening talk thereby acknowledging that we are on NINDS radar. Much of the discussion in the breakouts was about how we (the nonprofits) could collaborate to bring more funding to NIH and work across our diseases/conditions to make scientific breakthroughs.
In one-onone conversations with program directors, we also got very positive feedback on the accomplishments of our partner and grantee the Hydrocephalus Clinical Research Network (HCRN). While the funding environment has become tighter, our strategy of funding young investigators was validated as a tactic to increase the potential for future NIH funding of hydrocephalus research. The Hydrocephalus Association has begun to build important relationships with a number of NIH program directors that will help us advance our government’s support of hydrocephalus research.