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.

Opening a door to PH pediatric research

On November 7, Bob Gray in PHA's Development Department and I traveled to New York for a small but important celebration...an event that we hope will someday soon mark a turning point in pediatric pulmonary hypertension research.

On the train up from Washington, DC, I found myself thinking back to 1999 when Jack Stibbs - the father of young Emily (now a college student) - had come to PHA wanting to raise funds for pediatric PH research.  Dr. Bruce Brundage had to tell him that there was no specific pediatric PH research underway at the time and precious little in PH period.  He told Jack the goal needed to be pulmonary hypertension more generally.  That answer was always a target for change.

Last year, Dr. Robyn Barst, one of the pioneer pulmonary hypertension researchers and clinicians - and the pediatric cardiologist who founded the PH Center at Columbia - made a generous contribution to begin a pediatric research fund...one which PHA named in her honor. 

Our plan is to begin to advertise for grant applications when the Robyn Barst Pediatric Research Fund reaches $1,000,000.

The purpose of our luncheon in Manhattan was to receive an extraordinarily generous $500,000 contribution to add to the Fund.  It was given in Dr. Barst's honor from the Cardiovascular Medical Research and Education Fund (CMREF).

Pictured from left to right in the photo above are Dr. Stuart Rich who among other contributions led the early research on calcium channel blockers for PH, PHA's Bob Gray, Dr. John Newman whose many contributions to the field include a leading role in research resulting in discovery of the PH gene, CMREF board member Michael Fishbein (Mr. Fishbein is a Philadelphia attorney who coordinated much of the fen phen litigation), Robyn's husband Dr. Sam Barst and Dr. Robyn Barst, PHA board member Rev. Steve White who is also a significant contributor to the Barst Fund, Dr. Erika Berman Rosenzweig who succeeded Dr. Barst as Director of the PH Center at Columbia Presbyterian Hospital in New York City and me.

CMREF's gift has moved us to just about $800,000, much closer to the day when we can begin making grants from this important new Fund.

On December 16, PHA will be running the ad below in a pulmonary hypertension insert in over 485,000 copies of USA Today in Boston, Chicago, Dallas, Nashville, St. Louis and Baltimore/Washington, DC.  Expected readership is over 1.2 million.


Readers are encouraged to visit a new web page at
www.PHAssociation.org/BarstFund
We hope you will too!

A quarter century ago, PH research was just beginning.  Today the interest and advances are significant and growing.  It's time for pediatric PH research to have the opportunity to catch up.  PHA is proud to help make that possible.

I hope you'll take a look at the 8 page USA Today insert on PH.  It includes the Barst Fund ad and a lot more.