Tuesday, January 21, 2014

Brushing aside the shadows…

In January of 1991, PHA’s four founders came together to end isolation – their own and that of all others whose lives have been touched by PH.  Their message to others living with PH was, “You are not alone!”
Today, twenty four years later, that message continues.  It has become a rallying cry not only for patients and families but medical professionals and researchers, as well.  It speaks to the reality that we are stronger when we stand together.

This week, I found myself thinking about the globalization of that unity.

The story goes back to 2000…

In Chicago in June of that year, people from seven nations came together at PHA’s Fourth International Pulmonary Hypertension Conference.  At the time, there were three PH associations in the world, the U.S.http://www.phassociation.org (1991), France (1996) and Germany (1996).  At the end of the Conference, our board invited all those from other nations to meet with them.  About a dozen people came. We stayed in touch over the internet and before the end of the year, PHA of the United Kingdom and PHA Israel had both formed.  Now there were five!

As we prepared for PHA’s 2002 Conference in Irvine, California, we planned ahead for an International
session.  When we walked in the door, I will never forget the thrill of seeing 80 people from throughout the world pack the room.

We asked a simple question, “How can we help?”  After a good amount of discussion, a patient from Mexico said, “You are the oldest and the biggest association.  We need to learn from you and from each other.  We need you to help.” 

At the end of the meeting, PHA agreed to try to raise funds for an International Coordinator.  In 2004, I introduced that person, Allison Marian to our international guests at the 2004 Conference in Miami.  That was ten years ago.  Allison was followed by Angie Knott (today back in her home country as National Manager of PHA Canada), others and today, Julia Friederich.  These PHA staffers have maintained daily contact with our peers around the globe.  They have used connections to our staff of over 40 to solve problems and create value and opportunity for our partners.

When we began this international work, a board member asked an important question, “Why?”  The answer was clear and immediately accepted by our leadership.  We are all in this together and, as we end isolation – wherever in the world it may be – we all become stronger in the fight against PH. 

Put more simply, it’s the right and the smart thing to do.

By sharing our resources and building communications networks, we all grow more rapidly.  We minimize mistakes and encourage those who are isolated to take the first steps toward unifying and organizing.  We make sure that any good idea – no matter where in the world it emerges – is available to and used for the good of all.  We accelerate the fight against PH.  We maximize its effectiveness.

Today, there are 68 national PH associations across the globe. Umbrella structures are in place in Europe (PHA Europe) and Latin America (Sociedad Latina de Hipertensión Pulmonar).  Associations are active in Asia, the Middle and Far East, Africa and North America.  We continue to grow together.

At PHA’s 2010 Conference and Scientific Sessions, we introduced the International Leadership Summit as an opportunity for association leaders around the world to get to know each other personally.  The friendships and direct exchanges that emerged proved the value of the session.  The second Summit brought together leaders from 23 nations (30 nations were represented at conference overall).  We just got word this week that our funding is in place for the Third International Leadership Summit.  It will take place as part of the 2014 PHA International Conference in Indianapolis.  

It is one of the important activities – patient, family and medical education, scientific sessions, networking opportunities and research being among the others – that make the International PH Conference the largest and most essential PH meeting in the world. 

It's also a place where none of us are alone and all of us are stronger.  No matter where in the world we live, we are one...brushing aside the shadows, sharing the flame.

No comments:

Post a Comment