Thursday, July 29, 2010

Carol Vreim...

Today is Carol Vreim's last day at PHA...

She certainly been been a tremendous asset to PHA as a part-time employee for the past several years but her life and work have been intertwined with the PH community since the 1970's.

In 1973, a group of physicians with an early interest in PH met under the auspices of the World Health Organization. Their goal was to review the current state of knowledge on Primary PH (later described as idiopathic PH).  Following that review, they proposed the establishment of a multicenter collaborative study. This led to the historic and invaluable NHLBI PPH registry which enrolled 187 U.S. patients  from 1981 to 1985. Carol was in charge of that registry.  It was this information that framed much of the research that took place over the next two decades.  It also helped to develop a network of physicians who built this little known field into today's vibrant and active medical community.

Carol also was a catch point for patients during a period of great isolation.  They would call her desk at the National Heart Lung and Blood Institute and she would put them in touch with each other and, as PHA came into existence, with PHA leaders.  As a trustee of the Dauna Leigh Bauer Foundation, she kept Dauna's legacy alive, through early Foundation gifts that helped PHA establish itself in the early days.

After Dr. Vreim's retirement as Deputy Director of the Lung Division at NHLBI, we were honored to have her talents at PHA.

Thank you Dr. Vreim.  Good luck in your move to Pennsylvania. Have no doubt that we'll miss you and that we'll stay in touch!

Thursday, July 8, 2010

A striking point...

On June 29, the following appeared in an article titled FDA Weighs Rare Disease Drug Regulation But Agency Nixes New Division in the publication, FDA Week.

“Experts suggest that there are roughly 200 FDA-approved treatments for the nearly 7,000 rare diseases that exist globally. So while there have been many successes, the unmet needs are huge,"
I read these words and read them again. 

Why were they so striking to me?  Do the math and consider this...

With 8 treatments for PH, 4% of the approved treatments for the 7,000 rare diseases are for PH.

While PH is a rare disease, our patients' and families' focus on putting a spotlight on this disease has brought it out of the dark corners and into the attention of our dedicated researchers and clinicians and the pharmaceutical companies considering new treatments to pursue.

We are not yet where we need to this point there is not a cure.  However, these numbers  are the result of hard work toweards a clear target.  They.are one indicator that we are moving forward rapidly thanks to the dedication of our community of hope.

Friday, July 2, 2010

Conference bits – Heroes: Wendy and Bill Bockhorst

One of the greatest parts of the Conference experience for me is the connections and reconnections.

Bill and Wendy Bockhorst are among the heroes I have seen at past Conferences. I knew that I would not see Wendy this time. She passed last year. I did see Bill though and it reminded me what great people they are.

Together, they had for years organized golf tournaments and casino nights in Arizona and Wendy had been a support group leader.

Seeing Bill reminded me of Wendy’s courage and her words.

“One main reason that I get involved through special events is because my PH is genetic…if I can continue working to raise funds for and awareness of this disease, then maybe the next generation won’t have to suffer as much."
It is because of people like Wendy that the dedication on the video we create at Conference is unchanging. That video – and, indeed, the Conference – is dedicated to

“…the memory of those who have gone before, to the spirit of those who fight back today and to those yet to come.”
Wendy is on the left in the picture above.

Conference bits: on a personal note

Our PHA staff prepares detailed outlines for each of our plenary sessions. With so much going on, it’s important that our meal and other programming not run over and keep registrants from other activities. I receive and approve those timelines.

At our Friday night dinner, something seemed wrong.

I saw Amanda escorting Pat Paton, one of our founders, to the stage. Staff was also putting a chair on the stage next to the podium. This was not in the script.

The next thing I knew, Pat Paton was inviting me to the stage to sit in the chair. Her presentation was about my 10 years at PHA. While that was quite a surprise, a bigger surprise came a moment later. Pat spoke about my wife, Laura, not being able to attend past Conferences but now she was in the room. I started looking around for a speakerphone. Instead, I saw Laura starting to come up the stairs to the stage. She really was in the room!

Following Pat’s talk, her sister and PHA co-founder, Judy Simpson presented me with a very special plaque. I say special because it includes the names of all the board members I have served with during the past decade.

It was a wonderful surprise and one for which I will always be grateful.

Thursday, July 1, 2010

Conference bits - A radio marathon

Before I came to Conference for the first time in 2000, I spoke with our board chair, Bonnie Dukart, about using the event to generate press and build awareness of PH. She told me there had been board concerns about such public visibility. At the time there was fear of losing jobs.

That has changed over the years, with our community understanding and embracing media awareness as a tool to put a spotlight on this disease and build momentum for change.

This year, we focused a considerable part of our press efforts on the fact that PHA, the organization representing a disease with only 20,000 to 30,000 diagnosed patients, gives an annual award to a physician carrying a prize of $50,000 for continuing clinical excellence at the physician’s PH center.

The approach worked – bigtime!

The day before we left for Conference, this year’s winner, Dr. Vallerie McLaughlin and I started off with an hour long PBS radio interview that turned out to be just a warm-up.

Last Thursday at 3:30am Pacific Time, Dr. McLaughlin and I made our way down from our rooms to a meeting space where we did 15 more radio interviews – each 10 to 15 minutes long – over the course of the next four hours. The interviews brought us into East Coast drive time and covered markets ranging from New York City to Oklahoma City, from Detroit to Colorado Springs. First reports were that we brought the PH message to 2.5 million listeners…and replays are expected to add up to 4 million more.

How can we fail when we have members of our community willing to work day and night – in this case, literally – to make a difference?

After the interviews, Val and I made our way to other meetings, including our PHA board meeting and International Leaders Summit that started soon after.

Conference bits – the Fashion Show

I never thought I could enjoy a fashion show…but, at Conference. I surely did.

Rynna Ollivier has been producing these at PHA Conferences since 2002. Her own experience as a model and a fashion show producer certainly showed. However, it was her experience as a patient that made this something so very special.

I knew that many who have come to Conference over the years saw this event as a real highlight but I had always been too tied up with conference details to attend.

No excuses this year. The Fashion Show had been built into the Saturday night dinner. As Rynna said in giving the history of the show, “it started in a little room that was overfilled with patients anxious to see how others lived and dressed with the pump and oxygen. It grew every time and tonight for the first time, it’s a big part of the big show. Our patient models are here in front of all 1,250 of you.”

It was great to see over 20 models, little ones and adults, walk the runway, while Rynna spoke about fashion, pumps, oxygen and connected all this to the lives of patients, families and medical professionals. Indeed, the medical professionals were a very special part of the final segment of the show. The crowd went wild when Dr’s Mike McGoon of the Mayo Clinic, Fernando Torres of University of Texas Southwestern, Ron Oudiz of Harbor UCLA and Dunbar Ivy of University of Colorado Children’s Hospital came onstage and escorted their patients on the runway.

It was a special moment at a very special event.

Enjoy the Fashion Show slide show at the top right of this blog page (click on View All Images).  I'll leave it up for a couple of weeks.