Saturday, October 30, 2010

Charity's back...

The last time I blogged about Charity Tilleman-Dick was in October 2009, shortly before her double lung transplant.   Several years earlier, as a rising young opera singer living with PH, Charity gave a concert to introduce official Wahington to an understanding of PH.  Her pianist at the Kennedy Center that special night was then Secretary of State, Condoleezza Rice.  The concert generated world headlines.

Late last year, while speaking at the Cleveland Clinic's annual PH Symposium, Drs. Paul Hassoun, Omar Minai and I walked over to the hospital to visit with Charity, who was beginning her long road to recovery.   She was in bed but was anxious to speak and her brother voiced the words she was mouthing. We saw her take one of her first brief walks down the hall.

I didn't hear much about Charity for awhile - until late May of this year - when she burst into the press again.  Charity, and her spirit and extraordinary voice were back!  She was performing at the Cleveland Clinic Patient Experience Summit, and, in the second song of this clip, dedicates Gershwin's, Someone to Watch over Me to the doctors, nurses and hospital staff who had taken care of her.

Then in September, she gave an impromptu concert at the inaugural Colorado PH 5K Walk/Run and, this past Tuesday, opened the TEDMED health conference.

Yes, Charity's back...we're glad of it...and I'm sure we'll be hearing more from her!

Monday, October 25, 2010

Awareness Month is almost here...

PH Awareness Month is a special time to focus our communities on understanding PH.  It begins next week...and a lot is already happening.

Press is starting to build. Diane Ramirez from North Carolina and Vallerie McLaughlin, M.D. from the University of Michigan had a great joint interview with Dr. Radio (Sirius) from both a patient and physician perspective. It's well worth a listen.  After the interview, Diane also got word that the New York Times would like to interview her for their Patient Voices series.

If you'd like to get your own free Media Guide, Media Action Alerts and other media resources, they're all waiting for you here.

Every year more Members of Congress and their staff members learn about PH at our Congressional Luncheon.  This year it will be on Wednesday. November 17 at noon at the Library of Congress, Members Room, Jefferson Building.  If you're in the Washington, DC area, you're welcome to attend.  If not, we ask you to call your own Member's office and make a personal invitation. PHA has all the information you need  to find your Representative and make an effective connection.

More and more PHA members are involved in creating awareness by inviting their local goverments to issue Awareness Day, Week or Month Proclamantions.  Patients Doug Taylor and Leslie Polss are having so much fun with this they've created a video and cartoon showing how it's done. There's even a model proclamation for you to use as a template.

If you're into social networking, there are special programs available for you.  Blogging Day is November 16.  Find out how you can use your personal story, blog or Facebook page to build Awareness.
November is Awareness Month.  It's a great time to put in a little effort to make a big difference.  We hope you'll take advantage of one of the many choices and how-tos available to let your community know about pulmonary hypertension.  If you do, we all win!

Monday, October 11, 2010

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.