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Showing posts with label Pat Furlong. Show all posts
Showing posts with label Pat Furlong. Show all posts

Saturday, July 19, 2008

PPMD Day 3: The Main Room!


Part 3 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

If you haven't seen Mel Brooks' "History of the World, Part I" then you probably won't understand the title of today's entry. But the basic idea is that Comicus, played by Brooks, uttered said line upon being informed by his agent that he was to play at Caesar's Palace (this is in ancient Roman times, mind you) in the main room. But I digress.

Today I played the main room at the PPMD conference, along with four other adults with DMD. Led by our ringleader, Pat Moeschen, we addressed a room full of parents of younger children with the disease, talking about our lives and accomplishments, often bringing down the house in the process.

The main theme of our talk was that life does not end with a wheelchair. We have all been able to accomplish much in our lives, despite being in chairs. (From left) Jason Abramowitz spoke about traveling and playing competitive wheelchair sports; Pat Moeschen spoke about his work as a middle school music teacher; Conrad Reynoldson, who is double-majoring in history and political science, talked about his internship last summer on Capitol Hill; Jacob Gapko spoke about his PhD work in library and information sciences and the annotated biography he has compiled on books written by and about those with muscular dystrophy; and I talked about my book and my master's research. No topic was overlooked in our talk, as we addressed education, family dynamics, independence, and yes, even sex and relationships. "Don't ask a question if you don't want the answer," our moderator forewarned the audience at the beginning of the session.

As I rolled off the platform following our talk, I was greeted by PPMD President Pat Furlong, who thanked me and asked me to be there at next year's conference. I have to admit that I got a little choked up. Next year's conference will be in another city, which presents a number of challenges, chief among them transportation. I know I will overcome these challenges, but an even bigger challenge is my health. It's very hard to think in terms of an entire year, but I will do everything in my power to be there.

That is, unless I become a raging alcoholic, which may happen if I keep hanging out with Pat Moeschen! Following tonight's delicious banquet at which we celebrated Executive Vice President Kimberly Galberaith's 10 years on the job (from left are Jason, Jacob, Kimberly, Conrad, Pat Furlong, me, and Pat Moeschen), he had me out into the wee hours of the night drinking! Of course, "drinking" for me entailed the consumption of half a glass of some sort of vodka concoction. I'll tell you, though, it was enough to ensure that I am now absolutely exhausted. Time for bed. Early wake-up time tomorrow, as I need to get down to the hotel in time to say goodbye to my friends.

Thursday, July 17, 2008

PPMD Day 1: Together Again


Part 1 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

It was a family reunion of sorts today, as Parent Project Muscular Dystrophy kicked off its annual conference.It was an opportunity to reconnect with a number of parents and medical professionals I had met at last year's conference. Here I am with Dr. Steve Wilton, of the Australian Neuromuscular Research Institute, one of the world's leading Duchenne researchers. I also met a bunch of new faces, some of whom already knew me from this blog and/or my book. It seems I have become quite a celebrity. But don't worry, I won't let it get to my head...well, not too much, anyway!

On a more serious note, as I watched a video about PPMD at the beginning of today's proceedings, I was in awe of what this organization has been able to accomplish in only 14 years. They're at the forefront in developing care considerations for DMD and are investing heavily in research to find a treatment for the disease. Many people are responsible for PPMD's development, but without the vision and energy of PPMD President Pat Furlong, I doubt that any of this would happened. I salute you, Pat, and promise to do my part for as long as I live.