Steve Van Wormer's path of pediatric PH...6 years later

The following guest blog was written by Steve Van Wormer on the anniversary of his son's diagnosis with PH. Thank yoiu Steve, Lucas and Marina for all you do and for being models for so many in our community...

My PH Past:

Today marks the six-year anniversary of my son Lucas’ Pulmonary Hypertension diagnosis.  On October 28, 2006 he was only four years old when he underwent an array of cardiac testing and my wife Marina and I first heard the words, “Pulmonary Hypertension.”  As any PH parent, patient or caregiver can attest to, it’s a day one never forgets and a diagnosis that changes everything.  Lucas did have about a year of declining health and energy, but in hindsight, we consider ourselves lucky and blessed that his diagnosis was made earlier than most in our community.  What I remember most about that day, after shedding some tears of course, was making the decision to not curl up in a ball but to become a champion for our only child.

 

My PHA Present:

In January through May of this year, thanks to receiving a Tom Lantos Innovation in Community Service Award, I created a series of five Public Service Videos for PHA, with the hope of building PH Awareness.  These videos seem to be resonating not only within our community, but in the media as well.  They have generated news stories on TV & in print and have become a fixture on YouTube and facebook and at PHA events.  They’ve even played on flat screen TVs inside port-o-potties at PHA’s Woodland Crawfish Festival fundraiser… true story!

 

One of those spots, which can be found here, is a call to action to support the Robyn Barst Pediatric Research Fund, voiced by none other than Lucas himself.  As a parent, I couldn’t be prouder of his contribution to PHA.  As a member of PHA’s Board of Trustees, I couldn’t be more thankful to former board chair, Carl Hicks, who was instrumental in taking the Barst fund over its $1,000,000 goal at a recent fundraiser, triggering PHA’s first ever pediatric specific research initiative.   

 

Earlier this month, to coincide with PH Awareness Month, my creative partners and I were asked to translate some of these PSA spots into Chinese and Spanish to reach patients and medical professionals across the globe in China, Spain, Mexico and South America.  I’m so thankful that, six years after Lucas’ diagnosis, PH Awareness continues to spread across the world.

 

My PHA Future:

I’m very happy to announce another PH Project that launched a few days ago on Thanksgiving: a PHA Podcast, dedicated to raising PH Awareness.   “Empowered by Hope – The PHA Podcast” will bring dynamic stories and journeys from PH patients, caregivers and medical professionals in a series of impactful, insightful and, most importantly, hopeful conversations with members of the Pulmonary Hypertension Community.  Three episodes were released last week.  They are a series of conversations with our “Kitchen Table” Co-Founders Pat & Jerry Paton, Judy and Ed Simpson, and Dorothy Olson.  I’m sure you will enjoy listening and learning all about how our organization was formed.  A facebook page was also created (search: Empowered by Hope: The Pulmonary Hypertension Association Podcast).  I hope you can take a moment to “like” it and join in on the conversation.  I’m spending today’s six-year anniversary of Lucas’ PH diagnosis at UCLA with Lucas’ PH doctor (Dr. Juan Alejos), recording a new episode, with many more to follow.

 

In one of the podcasts, which you can subscribe to and download here, PHA Co-Founder, Judy Simpson told me what it means to be a PH Caregiver.  She said, “You do things you never thought you could do.”   Truer words have never been spoken. 

 

So many things have happened on our PHA journey over the past six years… so many things I never thought I could do. 

 

Did I ever think I would travel to Washington D.C. to visit Congressional and Senate offices to solicit support for our PH Healthcare Bill?  No.

 

Did I ever believe I would serve on a planning committee for an international Conference for 1500 patients, caregivers and medical professionals?  Certainly not.

 

Did I ever suppose I would create videos and podcasts that would be shown across the globe from Burbank to Barcelona to Beijing?   Never.

 

But I did.  And I do.  And I will continue.  In honor of my son, Lucas.  On behalf of pediatric patients like Iain, Katie Grace, Parker and Maddie, who need more research and treatment options sooner than later.  In memory of pediatric patients like Rayni, Taylor, Meaghan and Molly - who may have lost their PH battle, but will never be forgotten.

 

From a kitchen table to around the world...

Last year, Mike McGoon, our former board and Scientific Leadership Council chair and a cardiologist specializing in PH at the Mayo Clinic made a good point.

"PHA has so many good videos but none of them tell our story.  Wouldn't that be valuable?"

There was no question he was right.  The only question was when to do it.

That answer took less than two minutes.  Our Tenth International PH Conference was coming up the following June and that was our clear target.

We gave our friends at Glenn and Glenn our goals and they completed the project in time for the opening of Conferernce 2012.

At 1:00pm on Friday June 22nd in the Renaissance Hotel in Orlando, the ballroom filled with over 1,500 PH patients, caregivers, medical professionals and friends from 27 nations, the lights came down and we premiered our new history video: From a kitchen table to around the world.  As it ended, the spotlight came down to our three surviving founders (Dorothy Olson, Pat Paton and Judy Simpson, with an empty seat for Teresa Knazik), seated at the same kitchen table around which they founded PHA on January 12, 1991.  The video of Judy Simpson's speech will be posted in the next couple of months... along with much of the other content from Conference 2012 on PHA Classroom (for patients & caregivers) and PHA Online University (for medical professionals).

For now, though, I hope you enjoy From a kitchen table to around the world...



There's lot's more PHA history available for you, including Gail Boyer Hayes' outstanding 116 page early history.

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.


___________________________________________________________

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.