Wednesday, June 27, 2012

Conference 2012!

The first PHA Conference I attended was PHA's Fourth in June 2000 in Chicago.

It was amazing in its connections of patients, families and medical professionals. I'll never forget how large the crowd was 800, up from 500 in 1998.  In the back of the ballroom 4 or 5 exhibitors had 8’x10’ tables and were able to answer questions for patients - that, too, was a first.  When Conference was over, we invited 10 or 12 people from the 7 nations attending outside the U.S. to meet with PHA's board.  At the time, there were the U.S., French and German PH associations.  Shortly after that meeting, associations launched in the UK, Israel and Japan.

Now, I've returned from the 2012 International PH Conference, PHA's Tenth.  My amazement continues... at the connections, the commitment, the exchange of knowledge and mostly, the spirit of hope.  As I sort out all that I saw and continue to hear from others, here are a few brief thoughts to get started...

·       This Orlando Conference we completed last Sunday had 1,511 registrants from 27 nations.  There were more patients, there were more caregivers, there were more doctors, there were  more nurses and there were more from industry than we ever hosted before.

·       The Scientific Sessions we added to Conference in 2004 have continued to grow in attendance and quality.  When I walked in the room on Thursday, I saw more medical professionals than the entire Conference a decade ago.  The comments from physicians and researchers convinced me that Dr. Bull and his committee brought science on their chosen topic – The Genetics of Pulmonary Hypertension – at the highest level.

·       This was a more complex and layered Conference then we ever organized before.  One of my traditions at Conference has been to walk the floor - to use my time to be available, to listen and to get to know our members.  At this Conference, there were so many essential side meetings, to my regret, I found that possible to a much lesser degree.

·       We pre-opened on Thursday with PHA's Board meeting and our Second International Leaders' Symposium. About 40 PH association leaders from 20 nations had the chance to offer each other training, share experiences and develop ongoing connections.  Canadians and Latin Americans also had their own planning meetings during Conference.

·       Over the years, we have increasingly used video to tell our story.  It was wonderful to see people’s reactions to our Conference opening on Friday where we showed our new History of PHA video… and when it was over, brought the spotlight down to the surviving founders (Pat Paton, Judy Simpson and Dorothy Olson) seated around the actual kitchen table where they met with Teresa Knazik in June 1991 to found what would become PHA.  That film will now be available for PHA events and activities.

·       At Friday’s dinner Dr. Greg Elliott told the medical history of pulmonary hypertension and how its evolving solutions came to be intertwined with PHA’s own history… a theme of interconnectedness that many spoke to throughout Conference.

·       When people registered, they were given buttons with zebra stripes and began to see elements of Conference that reflected the theme.  Dr. Lynn Brown explained what these meant on Friday when she described PHA’s new Early Diagnosis Campaign.

·       It was wonderful to see so many of the children I met at the early Conferences now as young adults and many of the adults continuing to move forward with their lives.  One of the striking sights for me was poking my head into the kids room and seeing more than 50 young children – patients, children of patients and children of medical professionals – working together on projects and creating their own friendships and communities.

·       On Sunday, I was interviewed for a Pulmonary Vascular Research Institute (PVRI) publication by three doctors from Nepal, one from Greece and one from the U.K. and one from the U.S.  Our conversations expanded to how we can better work together… a continuing value of Conference.

·       Facebook postings about Conference seem to be everywhere from PHA's Facebook page to SouthAfrica to Latin America.  The movement continues to expand.

·       It’s good to know that PHA will continue to fulfill its value that meetings should have continuing value through this Conference. Virtually all of the content will begin appearing in PHA Classroom (content for patients and caregivers) and PHA Online University (content for medical professionals).

·       In the end, Conference has always been about the people.  This time was no different.  Highlights for me included Colleen Brunetti in simple eloquence sharing the story of her journey with PH… 13-year-old Matt Moniz telling of climbing the nation’s and the world’s highest mountains to raise awareness and to honor his young friend, PH patient Ian Hess… Dr. Ray Benza relating his work and service to his family’s immigrant roots… and, of course, the conversations in the halls and exhibit areas with so many heroes. All made our theme, the power of one, very real for me.

There’s so much more to tell but it’s time for me to get back to work. I always talk about Conference as our slingshot, the coming together that propels us forward in expected and unexpected ways. It’s time again to pull the band and fulfill Conference’s promise.

I do have one (ok, maybe, three) important question though.  What did you see?  What moved you?  What changed you?


  1. I saw hundreds of people from all over the country, and even other parts of the world, knowing they were all there for the same reason as I--to learn more about this horrid disease and meet others like us.
    Of course what moved me personally was my daughter receiving her award Sat. night and then getting to meet you afterwards. You are a very nice person. I also have to say meeting the guys with the Caring Voice Coalition meant a lot to me too.
    The best thing of all is what I took away from my first Conference. My daughter, doctor, and everyone had tried to convince me I could live with this disease but I did not believe them. I actually have gifts on my desk for my three children to open upon my death. Morbid! Well, listening to everyone at Conference and hearing how many years they have lived with this disease and listening to medical professionals talk about new medications and progress just around the corner, I now BELIEVE!!!!! I thank everyone at PHA for my scholarship so I could attend and now have a new outlook on life. God bless Mr. Rino.

  2. I am so glad that you were able to come and experience Conference...and congratulations to Jennifer on winning the Caregiver award! Conference exists for the reasons that you write about, to end isolation and help people find strength in and through each other. God bless as you go forward in your life.