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.


  1. Why are there no patients listed among those volunteers? Surely there are more patients than caregivers who work on these fundraisers?

  2. Good point, although Shannon Munson is a patient. Had I been writing about the Long Island PH Walk, I would have written about Joanne Sperando Schmidt and her great team from the support group. Had I been writing about heroic awareness efforts in Pennsylvania and Ohio, I might have written about Merle Reeseman. If I was writing about kids making a difference, I certainly could have written about Lucas Van Wormer. As a matter of fact, I've written about each of these patients and many more. This blog was about particular people who I saw together in one room on one day...and the things that they had done that I knew about. While we talk about PHA as an organization of patients, caregivers and medical professionals, I guess that not every piece includes every element in equal proportion.

  3. For the last 5 years, the North Texas PHun Walk has been organized and managed by PH patients, with just a little help from non-patients. This year there are a couple of non-patients helping out (I am one). The PH patients are the driving force and the inspiration for us all. We caregivers and supporters are hoping to ease the burden for the PH patients and help make the event even more successful. When it's time for recognition, they will always be first.

  4. Thanks Susan. Yes, North Texas and many others. You are right.