1. Creative Advocacy -- Effectiveness not limited by staff and budget Paul Gross, Past Chair, Hydrocephalus Association

2. Case Study Hydrocephalus Association: Goals  Ambitious and ignorant start  “Fair share” of research funding (~$75M / yr)  Set aside funding for hydrocephalus  NIH PA’s, PARs, and RFA’s  Million dollar awareness campaign  Tempered successes  Listed at disease with an RCDC code  Influenced letters from Appropriations Ranking Member and others to Francis Collins  Developed relationships with NINDS staff  Started learning the DoD/VA policy process

3. Case Study Hydrocephalus Association: Misfires  “Fair share” of research funding (~$75M / yr)  Not how it works! Good science prevails  Grants are a numbers (submissions) “game”  Set aside funding for hydrocephalus  Nearly impossible in this policy environment  Set asides force NIH to fund lower quality science  NIH PA’s, PARs, and RFA’s  These are staff / leadership driven and very hard  Million dollar awareness campaign  Awareness is not targeted and is a means not an end

4. Case Study Hydrocephalus Association: Successes  Influenced letters from Appropriations Ranking Member and others to Francis Collins  NIH works for Congress and pays close attention  Letters from ranking members and chair create squeaky wheels that need and get grease  Listed at disease with an RCDC code  “Only numbers that are tracked matter”  Developed relationships with NINDS staff  Born out of the 2005 workshop, constructive relationships with staff and leadership helped  Started learning the DoD/VA policy process  There is another pot of money here that is influence in a very different way

5. Case Study HA: Keys to Tempered Successes  Built relationship with health staffers in key members offices.  Used constituents to gain access and tell stories and staff to make asks.  Learned where in legislative process to plug in  Maintained a consistent dialogue and a positive attitude  Hired a part-time consultant to set strategy  Letters from member to NIH work  Report language is even better  Engaged NIH staff in the problem and the solution