Nurture Grassroots Power:Engaging Your Members & Managing Your Growth

Debbie CastroPHA Director of Volunteer Services

Alex Flipse, Diagnosed 1998

My Involvement

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

PHA: Founded on volunteer spirit around a kitchen table.Florida, USA, 1990

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

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

All things are possible when building a constituency-

driven organization with a clear sense of goals and a

readiness to jump on opportunities

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

Elements for PHA’s 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.

Volunteer Management

Systems Coordinated

Board of Trustees

Medical Networks

Support Groups

Special Events

Pathlight

Support Line

Intermittent

Art design

Internet

Translations

Writing

Press

Research

Patient-to-Patient Support

Line What is the Support Line?

Who are the volunteers?

Staff administration

Cheap and Effective

www.PHAssociation.orgSupportLine

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

Medical Education Fund

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

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

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.)

PHA Online University

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

PHA International Connections

Christine Dickler, Associate Director of International Services

50 official Pulmonary Hypertension associations worldwide

Email List Seed Grants

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

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