1. Progress Through Partnership Non-Profit Session September 11, 2013

2. Why a NPO-only session? Strong feedback from 2012 meeting! – Extend meeting to 1.5 days – Desire to have more time learning from each other and networking – Interest in advocacy – how can NPOs leverage their impact? – How can NPOs work together, coordinate efforts, share information? – Interest in NINDS partners discussion forum

3. Planning Committee Ron Bartek, Friedreich's Ataxia Research Alliance (FARA) Paul Gross, Hydrocephalus Association Gardiner Lapham, CURE Amy Comstock Rick, Parkinson's Action Network Cynthia Rothblum, A-T Childrens Project Dean Suhr, MLD Foundation Tina Tockarshewsky, The Neuropathy Association

4. Goals Provide a forum to exchange information and lessons learned related to: NIH budget process Implementing creative advocacy approaches Building productive relationships with NIH program directors Strengthen non-profit collaborations and identify opportunities to advance neurological research

5. Non-profit survey results (n=32) Whos in the room? – Nearly half here today are new to this meeting – Average age of responding organizations – 25 years (max 77 years, mean 23 years) – 60% focused on rare disease (only 4 orgs with prevalence >1 million) – How big in 2012? 10 organizations with budgets < $500,000 4 organizations with budgets $500,000-1 million 6 organization with budgets $1-5 million 3 organizations with budgets > $5 million

6. Percent of organizations funding research

7. Staffing breakdown

8. Advocacy

9. NIH relationship 90% monitor NIH initiatives 85% know their program director 75% have had a dialogue with their director

10. 64% belong to coalition(s) American Brain Coalition (13) Health Research Alliance (6) National Health Council (2) Research America (8) Alliance for Stronger FDA (3) NORD (3) Genetic Alliance (1) Society for Neuroscience (1) Disease specific coalitions (12+)