1. NINDS Budgets: The Good, the Bad, and the Ugly Nonprofit Forum 2013

2. NINDS Budget from 40,000 feet Appropriation for FY 2013 was $1.53B – 5.7% < 2012 Budget request for FY 2014 was $1.64B, but CR expected to continue spending at current sequestration levels Normal NINDS budget allotment: –~87% extramural grants –~10% intramural programs –Remainder to administrative Current pay line is 14 percentile Only 18-20 percent of first submissions are funded Our nonprofit organizations will continue to receive a lot of applications

3. How Does NINDS Make Funding Decisions? Not by diseases “The NIH does not expressly budget by category [disease area].” World's gold-standard process - Two-tiered review process: –Peer review based on study sections (recently revised) –Review by National Advisory Council (Program Staff proposes to Council based on peer review; Council recommends to Director; Director and NINDS leadership make decisions So, it all begins with the number and quality of the applications submitted

4. Successful Advocacy Approaches In doing what you need to do for your patients, do it WITH the NINDS, not TO the NINDS Get to know and work with your Program Director (PD); seek your PD's advice early and often Keep your PD well informed regarding the state of your science and needs Attend meetings of the National Advisory Council Become familiar with all the funding mechanisms -- e.g., R01s, R13 (workshop), Clinical Trial grants, K grants (training), U grants & Cooperative Agreements, small business grants (SBIR) Become familiar with and stay abreast of the NIH trans-Institutional mechanisms -- e.g., NCATS programs, Common Fund mechanisms Keep your investigators alert to opportunities within these various mechanisms and to deadlines involved Play an active role in applications, when appropriate -- e.g., letters of support, co-applicant, alert your PD

5. Successful Advocacy Approaches (Cont’d) Explore/consider with your PD possibility of Program Announcements (w/ and w/o set-asides), RFAs & RFPs, etc., especially when excitement grows re a general topic/requirement Grow your field: Assemble your investigators; insist on collaboration; provide as much financial support as you can (possibly seed grants to help collect sufficient preliminary data to build compelling NIH/NINDS applications) Build public-private partnerships: invite NINDS/NIH staff to your meetings; involve industry partners (or potential industry partners) to your key meetings; play matchmaker for your investigators (with potential collaborators, NINDS staff, industry partners) Advocate for more robust NIH and FDA budgets -- "A rising tide lifts all boats;" help get the NIH more resources and nurture your investigators so they can compete successfully for those resources on their (and your) own merits

6. Unsuccessful, Ill-Advised Advocacy Approaches Playing the "us and them"/ "my disease first"/zero sum political games in which you attempt to get political reps to authorize/appropriate research dollars specifically for your disease and force research programs down the throat of the NIH/NINDS As Congress was doubling NIH budget over five years (1999-2003), agreement achieved between Congress and NIH Director Harold Varmas to "let science make the call." That is, use the larger NIH budget to "fund the best science" rather than members of congress deciding which diseases should be funded Institute of Medicine Report of 1998 encouraged funding decisions to be based on scientific merit and disease burden -- advocates began to emphasize lobbying their scientists to do more/better science, working WITH the NIH, and lobbying congress for greater resources for NIH, FDA, etc.

7. Unsuccessful, Ill-Advised Advocacy Approaches (Cont’d) Devoting excessive time and energy to an attempt to assess whether your disease "is getting its fair share" of attention/funding is usually counter- productive Efforts have been made to better "track" disease-specific NIH funding (RePORT, etc.); but, no such system is adequate in gauging the total investment in any one disease for various reasons: –all our diseases have benefited tremendously from the basic and translational science that transcends categorization by disease –we never know from where the "next big thing" in our disease is going to come; "We don't make breakthroughs where we plan them; we make them where we can;” Medical research history is rich with discoveries made "accidentally" while working on something different (Penicillin by Alexander Fleming; Pacemaker; radioactivity, etc.) –So many of our diseases have common ground in terms of mechanisms of damage/action -- breakthroughs in any of our diseases, even rare ones, are likely to have beneficial impact on a host of other diseases So, better to spend time collaborating as widely and fully as possible with all the players in & outside your community along "successful" lines above.