Brazil conference 2010 november

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  • 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
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.