From Yonkers to Jeddah...in common cause

Two days after I attended Dr. Robyn Barst’s funeral in Yonkers, N.Y., Julia Friederich (PHA's International Associate) and I flew across the world to Saudi Arabia.  We had been invited to attend the Saudi Association for Pulmonary Hypertension’s (SAPH) educational meetings, the Sixth Annual Pulmonary Hypertension Meeting and Third Pulmonary Hypertension in the Young Assembly.

The two events were more than 6,000 miles apart, but they had an extraordinary connection.  The SAPH meeting was opened by the Conference Chair,  Dr. Maha Al Dabbagh, a pediatrician specializing in PH.  She began with a tribute to Dr. Barst, describing her contributions to the field.  This was followed by SAPH president, Dr. Majdy Idrees, asking the participants to stand for a moment of silence.  Robyn Barst’s reach and contributions were indeed global…in 2008, she had helped develop the Saudi guidelines for the diagnosis and treatment of PH.

The two days of SAPH meetings were important in expanding knowledge of PH in the region with attendance from many nations.  I was particularly interested to learn about the PH experiences in many nations in the region, including Qatar, the United Arab Emirates, Saudi Arabia, Egypt and the Sudan. These presentations were different from those I usually hear and demonstrated both similarities to and differences from our own experience in the U.S.

An important reason for our attendance at the meeting was a leadership discussion on how PHA could assist SAPH in the development of a patient structure.  It is always exciting to me to see physicians interested in building patient support and leadership structures – and always something PHA is anxious to support in whatever way we can.  Whenever and wherever PH leadership and awareness grow, we all become stronger in the fight against this disease.

It was a wonderful experience. We thank our hosts at SAPH and look forward to rapidly evolving this partnership.

An awareness month journey...

As I write this, we are only 10 days into Awareness Month...and it is already shaping up to be an extraordinary journey.

I began the month a bit early (October 28) with a 3 day trip to Frankfurt, Germany where I was honored to address the German PH Association - PHeV - on the occasion of their fifteenth anniversary.  Their founder, Bruno Kopp, is a PH patient in a family with 15 PH patients.  He is a man who said, "enough", and in 1996 decided to do something about this disease.  Over 300 patients and family members attended the conference and, besides Bruno, it was great to see so many old friends, including Gunter Timm (who acted as my translator) and his son, Drs. Olschewski, Grünig  and Ghofrani and PHA Europe president Gerry Fischer.  The event was a strong reminder of how vibrant the global PH community has become.

The day after getting back, Dr. Rich Channick and I journeyed to New Jersey where we met with Novartis medical leadership to help them understand PHA programs and activities as they anticipate entering this market.

When I got back to the office I saw an amazing growth in the ways our community is using social networking to build awareness of PH.  Weekly Facebook prompts began going out from our office with the first being, Pulmonary hypertension feels like...  Emma Bonanomi summarized this week's 83 responses as... 

ranging from the serious (“running up and down stairs for at least 10 minutes on an empty stomach with no sleep”), to the lighthearted (“the best dang excuse to play video games I've ever had :D”) to the inspirational (“my number one reason to fight harder”).

PHA's Facebook friending (and reach) has been growing at an amazing pace this month - at 4,981 this afternoon - on pace to be over 5,000 in the next day or two.

On another communication front, our web staff - Diane Greenhalgh and Kathy Frix - added a great new tool to PHA's website.  In the upper right hand corner of every page on http://www.phassociation.org/ is a select language box, allowing translation into any of 52 languages.

City, County and State PH Awareness Month proclamations have been flowing in rapidly (Elisabeth Williams reports 33 and growing) and South Carolina PHA member Doug Taylor even got his Member of Congress to discuss PH Awareness Month and PHA in the Congressional Record.

The American Thoracic Society has partnered with PHA for a PH Week (it began November 6) within that society of pulmonologists and launched a website to educate ATS membership.  As part of this effort, PHA is hosting a webinar on November 10 with 5 leading physicians presenting on Improving Patient Outcomes and Early Diagnosis.  Several days after the live event (over 170 registered!), it can be viewed on both PHA Classroom and PHA Online University.

Last Sunday, Jess McKearin and I were in Palo Alto, California for the Stanford Race Against PH.  It was their 11th Annual begun by the Ewing family and now grown to an event that includes over 1,500 participants.  Board members Harry Rozakis and Rita Orth were there to join with Drs. Zamanian, Krasnow and Feinstein and Kristi Kerivan and their great team from the Wall Center at Stanford. This year PHA launched our new Six Minute Marathon as part of the Race to provide more understanding of what PH patients go through with this disease.  It was a great success and we'll be rolling out the Six Minute Marathon at other events in 2012.

While Jess and I were in Palo Alto, Adrienne Dern, our Senior VP, was speaking at the patient program at the Cleveland Clinic PH Summit and our Medical Services staff. Rebecca Kurikeshu and Caitlin Flewellen were staffing a well-trafficked exhibit at the American College of Rheumatology meeting in Chicago.  Debbie Castro was on the road, too, for events in Phoenix and Fort Wayne.

The day after Palo Alto, Bob Gray and I Amtraked to New York where we had a wonderful luncheon to celebrate a major gift to the Robyn Barst Pediatric Research Fund.  We'll be telling more of that story very soon.  Tomorrow it's on to Memphis for an American Thoracic Society Patient Advisory Roundtable board meeting.

As I'm typing this, Megan Mallory brought in a hot off the presses copy of our 2011 annual report and that will be going out in the mail to members in the next few days.  I think it gives a great outline of all that our community is doing to change the history of this disease.

We've still got a long way to go on our the Awareness Month 2011 journey. Check PHA's News Feed to see what's new with Awareness Month...and PHA's Awareness Month pages to see how you can help! 

Alfred Fishman, MD: an appreciation

On Friday morning, as I was getting off a plane in Raleigh-Durham, I received a note from Carol Vreim (via Dr. Steve Kawut) that Dr. Al Fishman had died in Philadelphia at 92 years of age.

It was appropriate that the note came from Dr. Vreim, who in the early 1980's worked with Dr. Fishman and others in developing the NHLBI pulmonary hypertension registry which formed a cornerstone for much of the research over the following two decades. Dr. Fishman argued that registry into existence.

Put simply, Dr. Fishman was one of the early builders of the field of pulmonary hypertension.  His work made much of today's progress possible.

Here is what three of his colleagues have written...

The modern era in pulmonary hypertension began with the NIH Registry of Primary Pulmonary Hypertension in the early 1980’s that defined the disease accurately and began to base therapy on scientific study. Many of us in the field and in PHA started our clinical careers through work on this registry.

Al Fishman began his career in the pulmonary circulation in the 1940’s as a fellow with Cournand and Richards, who won the Nobel Prize for their work defining the physiology and diseases of the pulmonary circulation through right heart catheterization. Al Fishman was a major reason for the initiation and success of the NIH registry and for developing this second generation of PH researchers and doctors. We  owe him a great debt as we stand on his shoulders and are grateful for his vision.

John H. Newman, MD
Elsa S. Hanigan Professor of Pulmonary Medicine

Vanderbilt University School of Medicine
Chair, PHA Scientific Leadership Council

Al was the grandfather of PH. To me, that says it all. His insight and dedication to the field is why we have been so successful over the past 6 decades in studying the pulmonary circulation, which had to occur before we could even attempt to develop treatments for PH. I will always be indebted to what Al has taught me, that is, how to think and expand our dreams, exploring far beyond the horizon. He truly was a legend in his own time and will remain a great figure in the field of PH. 

Robyn Barst, MD

Professor of Medicine Emerita

Columbia University School of Medicine
Past Chair, PHA Scientific Leadership Council

The sadness of this news is buffered by the recognition that he led such a productive and gratifying life, and did it in a way that was inspiring to many, including me.  He will certainly be missed.  It seemed poignant and meaningful that the news reached many of us as we were at the REVEAL Registry Investigators Meeting in Boston, hopefully carrying on one of the many threads of his career in trying to further understand PAH by means of a national database

Michael McGoon, MD

Professor of Medicine

Mayo Clinic School of Medicine

Past Chair, PHA Scientific Leadership Council

Judy Simpson and her husband Ed who were among PHA's founders added this...

Dr. Fishman was an important person in the early days of UPAPH. [PHA's original name was United Patients Association for Pulmonary Hypertension.] 

Dr. Walker Long, with Burroughs Wellcome at the time, told us that if we could get Dr. Fishman involved other physicians interested in pulmonary hypertension would join in. How right he was!

Dr. Fishman was our keynote speaker at the First International Pulmonary Hypertension Conference in Stone Mountain, Georgia, in 1994. As many of you will remember this was the largest gathering to that date of physicians interested in pulmonary hypertension.

Dr. Fishman encouraged PHA and offered helpful suggestions to us along the way. We owe him a great debt of gratitude.

I had the pleasure of spending time with Dr. Fishman at many of the PHA International and American Thoracic Conferences and, like the Simpsons, appreciated his understanding and support of PHA's efforts.   When we were a small organization, he gave us encouragement and credibility.  As we grew, he continued to share his wisdom and knowledge.

In 2004 in Miami, Dr. Fishman delivered his last plenary session lecture at a PHA International Conference.  It was titled One Hundred Years of Pulmonary Hemodynamics. Typical of who he was, he wanted the lecture to provide understanding of progress to patients..and it did.

Thank you, Dr. Fishman, for all you did to make this a vibrant field with growing hope for patients. 

Your contributions were immeasurable.  Your legacy continues.


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Dr. Fishman wrote over 250 papers during his career. I thought you might like to read one written in 2003 and titled, Primary Pulmonary Arterial Hypertension: A Look Back.

For the many who have already asked whether PHA will establish a tribute fund for Dr. Fishman, that is being discussed and we hope to make an announcement shortly.