Monday, July 23, 2012

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.

Wednesday, July 11, 2012

The special in PHA events...

Each year there are about 60 events held throughout the U.S. to benefit PHA research and patient serving programs.

We call these special events but it's really the people who are special.

As I write this, I am halfway home - sitting in Dallas-Fort Worth Airport - from a golf tournament in Aliso Viejo, California.

Golf is golf (I can say that as a non-golfer) but this tournament was an act of love.  The Wojciechowski family writes on the tournament website...
It is with extreme pleasure that we invite you to participate in the 5th annual Swing 4 the Cure - Wojo PH Golf Classic on MONDAY – July 9th, 2012.
This charity tournament is held in memory of Jerry Wojciechowski, my wonderful husband and friend and in memory of our two sons Michael and Matthew. All three lost their battle with Pulmonary Arterial Hypertension too soon and will never be forgotten.
We are pleased to announce that we will be holding our tournament at the exquisite Aliso Viejo Country Club Aliso Viejo, CA We anticipate that this event will be a great success and will be fun and memorable for all who participate. Since 2008, this event has raised over $160,000 in research funds!
Betty Lou Wojciechowski (Wojo) has led her family (especially her adult daughter and event partner, Michelle) and friends to organize these events for the love of her husband and two children who she has lost to this terrible disease but also for the love of those still living with PH.  During the past decade or more I have seen her organize and lead support groups, turn her family's story to one of inspiration and hope for so many in our community, draw others into action to create a better today and tomorrow and, as her website says, raise over $160,000 for PH research.

Betty Lou is a living example of "the power of one" to make a difference.
But she wasn't alone in the post tournament dinner of 200 or so. Mixed in with golfers, relatives and friends were many other amazing people.

There was Jack Nino. Jack lost his fiancĂ© to PH a decade ago.  Ever since, Jack has come to PHA's International Conference and volunteers to work the whole time in our store. He also organizes a very successful golf tournament in Las Vegas.
...And Darren Bell who, after the loss of his sons went on to lead and help shape our partner and friend, PHA Canada as its founding board president and board chair.

...And Shari Caffrey, whose fulfillment of Taylor's Wish has grown in three short years from a 5K walk/race to a community celebration of the possible.

...And Steve Van Wormer whose talents and instinct have brought  our community the ability to deliver new levels of PH awareness to our fellow citizens.

...And, Shannon Munson and her husband, Rob, who together moved the audience with their PH journey fromn her diagnosis to despair to hope

I could go on for a long, long time but I think I've made the's the people who make the choice to give of themselves, to fight back who are - or maybe I should say, become - special.