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Creative Advocacy -- Effectiveness not limited by staff and budget

Creative Advocacy -- Effectiveness not limited by staff and budget. Paul Gross, Past Chair, Hydrocephalus Association. Case Study Hydrocephalus Association: Goals. Ambitious and ignorant start “Fair share” of research funding (~$75M / yr ) Set aside funding for hydrocephalus

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Creative Advocacy -- Effectiveness not limited by staff and budget

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

  2. Case StudyHydrocephalus 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 StudyHydrocephalus 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 StudyHydrocephalus 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 StudyHA: 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

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