Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)

Friday, July 13, 2007

PPMD Day 2: Getting to Know You


Part 2 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.

A conference like this serves as a wonderful networking opportunity within the Duchenne's "community" -- doctors, researchers, nurses, physical and occupational therapists, respiratory therapists, genetic counselors, government officials, parents, patients; the list goes on and on. I met so many people today just outside of the conference today that I barely had five minutes to listen to any of the presentations inside!

Among those that I met today were: a 34-year-old middle school music teacher with Becker muscular dystrophy from New Hampshire and his mother; the parents of a young son with Duchenne's from Massachusetts who started a research foundation called Charley's Fund; a doctor from Pittsburgh; the coordinators of a project on Duchenne interventions from the Centers for Disease Control (CDC) in Atlanta, and a researcher from as far away as the University of Western Australia. I even met two people from Columbia University who already knew me from my TV appearance back in February!

I got to hear about everyone's various Duchenne-related activities. I, on the other hand, charmed everyone with my sparkling personality and smashing good looks (well, at least the first part was true) and regaled them the story of my near-death experience on the train yesterday.

It made for a hilarious story today. Let me assure you that I didn't find it so funny yesterday. I had no problems today, but tomorrow is a new day, so cross your fingers for me...

No comments: