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?

Monday, June 11, 2012

Carl Hicks, an advocacy hero

On Wednesday, June 6 Carl Hicks sat at a long table in front of the Senate Defense Appropriations Subcommittee and told his story and made his request.

A former Army Ranger, Lt. Col. Hicks (Ret.) spoke about his daughter, Meaghan, and her battle with PH.   He has done this many times before, several years ago visiting the offices of over 100 Members of Congress in a two day advocacy marathon.
This time, he was asking the Chair, Senator Inouye and Vice-chair Cochran and the Subcommittee members to once again add PH to the list of diseases impacting military families.  Such a listing will make PH researchers eligible for grant funding from the Department of Defense research fund.  Carl made his request as the Senators looked at him and pictures of his beloved Meaghan.
You can watch Carl’s testimony on the Senate Appropriations Subcommittee website  Drag the time bar beneath the video to just past 33:00 to see Carl
We thank Carl and all our advocacy heroes who are getting to know their own Members of Congress and educating them about PH.  One Member at a time, we can and are making a difference.