1. Nurture Grassroots Power:Engaging Your Members & Managing Your Growth Debbie Castro PHA Director of Volunteer Services
2. Alex Flipse, Diagnosed 1998 My Involvement 3. Outline PHA Building a construct to change the history of an illness PH environment in the USA Elements of Success PHA and Volunteerism Medical Education Programs International Programs 4. PHA: Founded on volunteer spirit around a kitchen table. Florida, USA, 1990 5. 187 identified patients in the U.S. Patient survivability: 2.8 years for 50% NO disease-specific treatments Central organizing issue: ending isolation PH Environment in the United States in 1990 6. PH Power of our Population 20,000 to 30,000 patients are diagnosed with PH in the U.S. A huge growth from the 187 in 1985 and the 3,000 or so in 2001 With a smaller population to fight back, each person is essential to the struggle The Power of One you define the progress of this community 7. All things are possible when building a constituency-driven organization with a clear sense of goals and a readiness to jump on opportunities 8. Growth of the Association All Volunteer Handful of Programs Handful of key leaders Budget = $6,000,000 60 events annually 230 Support Groups 9 Treatments 1990 1999, First Ten Years 2000 2010, Next Ten Years 9. Elements for PHAs Success Understanding the ongoing value of engaging and involving the grass roots
PHA believes that our members are our primary resource. Members of the PH community have the right to fight back. PHA has the obligation to create structures that make that possible.