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Progress Through Partnership

Progress Through Partnership. Non-Profit Session September 11, 2013. 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 NPO’s leverage their impact?

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Progress Through Partnership

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  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 NPO’s leverage their impact? • How can NPO’s 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 Children’s 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) • Who’s 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+)

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