Thursday, January 5, 2012

Making a big noise for big change...

Remember the famous question, Would there be a noise if a tree fell in the forest and no one was around to hear it?

I've often thought that our challenge with PH is like that. 

Without an awareness among our neighbors and fellow citizens of what PH patients and their families are going through, how can we be heard?
How can we build an effective movement for change?

Over the years, we've made public awareness a taget and, despite our small numbers, have had good success. 

During my first year at PHA, we asked our members repeatedly to send us all the articles they could find on PH.  The total we received in that year - 1999 - was four.  Today, if you check Google News, you'll find one to four articles on any given day...and many of those articles have been driven by the efforts of our media volunteers and other community members.  Our stories drive our power for change.  They take us from the loneliness of the forest to consciousness in the public square.

An example of that consciousness came in mid-December.  As I mentioned in my last blog, we were awaiting publication and on the 16th of the month, USA Today included an eight page insert on pulmonary hypertension in six major metropolitan areas - Boston, Chicago, Dallas, Nashville and St. Louis.  The 485,000 inserts reached an estimated 1,200,000 readers.  It's online now and worth your read.

In 2012 PHA will be doing more to build that consciousness as a tool for change.  Through a recent reorganization, we have recently targeted strengthening our internal public relations and marketing capabilities. This includes bringing on a new Vice President for Community Engagement, Mollie Katz, with strong pr and marketing background.  In coming months, you will also have an opportunity to be part of the launch of an Early Diagnosis Campaign with the goal of speeding the time from onset of symptoms to diagnosis and treatment.  A broader by-product of that effort will be a larger spotlight on this disease.

We may never be able to answer the question about the falling tree but we can certainly make a big noise...and a big difference.

May 2012 be a year of great change and a better life for all those living with PH.


  1. PH patients experience indicators such as difficulty breathing, lightheadedness and exhaustion, and the degree of indicators usually fits with the development of the disease.

  2. Is it possible to finde a help for women with PH to become pregnant in the future....

  3. Almost never write any replies only now i just did not resist..