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 = <$100,000 < 15 events a year < 80 Support Groups 1 PH Treatment Staff grew, 2 to 40. Multiple Departments Structured Boards and Committees of leaders Budget = > $6,000,000 60 events annually 230 Support Groups 9 Treatments 1990 – 1999, First Ten Years 2000 – 2010, Next Ten Years

10. Medical Networks

11. Support Groups

12. Special Events

13. Pathlight

15. Internet

16. Translations

17. Writing

18. Press

20. Support Groups What do they do? How do they form? What do we offer? Impact in the community Impact in the PH Movement www.PHAssociation.org/SupportGroups

21. Medical Education Fund

22. 30 City Medical Education Program Description: Dinner programs presented at 30 second-tier cities throughout the U.S. and Puerto Rico. Second tier cities are defined as those that do not have a PH center or PH expert. Objectives: To present information on the diagnosis and management of pulmonary arterial hypertension (PAH) to physicians and other health professionals located in areas that lack recognized experts or centers for PAH. To create relationships with PAH experts so non-specialists will refer patients and will consult with experts on an ongoing basis when issues occur regarding patient management. Goal:20 attendees Format: Dinner, followed by 1.5 hour presentation given by a local PH expert on the classification, diagnosis, and management of PH; a brief case presentation; and a question and answer session. Venue: Hotels or restaurants in second tier cities without a local PAH center or expert

23. Preceptorship Program Description: Full-day programs at renowned PH centers; content delivered by specialists from that center. Objectives: To facilitate direct education and training of medical professionals, particularly cardiologists, pulmonologists, rheumatologists, and possibly primary care physicians, by experienced pulmonary hypertension specialists in clinical settings. (Physician CME and nursing CEU credits will be available.) To increase the number of physicians in the United States who can suspect PH, refer these patients to a PH specialist, and work with the specialist to effectively manage the disease. Goal:25-30 attendees Format: Day-long didactic presentations given by PH specialist from the host center. At least two hours of the training is devoted to extensive case discussion and a question and answer session. Venue: Academic health centers recognized for their expertise in PAH

24. PHA Online University Description: Centralized website for PAH-specific medical education for medical professionals including: CME courses for physicians and allied health professionals; online home of Advances in Pulmonary Hypertension; archived presentations from PHA’s medical meetings; and discussion boards Objectives: To sustain and expand a clear, focused website for medical education in pulmonary hypertension, segmented by levels of expertise and medical interest. (Physician CME and nursing CEU credits will be available.)

25. PHA Online University

26. PHA on the Road: PH Patient and Families Education Forum Description: One-day regional education events for patients and families, focusing on medical education and lifestyle issues, and with an enduring online component. Objective: To present information on the mechanisms, diagnosis and treatment of PAH and on coping and daily living with PAH to patients and family members in regional face-to-face settings, as well as adding content in a new online Virtual Patient Classroom and an awareness building component. Goal: 200 attendees

28. Email List

29. Seed GrantsChristine Dickler, Associate Director of International Services

30. International Resources Building Effective PH Association Guide We began by doing all that was possible to help PH patients that wouldn’t cost anything or very little: give correct information; listen to their problems and if you have a solution that works, offer it … a million other things can be done with just a little money and lots of time and work. –AMIP Italy www.PHAssociation.org/IntlBuildingAssociationTips

31. PHA has an obligation to involve anyone living with this illness as much or as little as they are able and willing to be involved. This volunteer spirit has been and remains PHA’s strength. Parting thoughts: Debbie Castro, PHA