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Sunday, July 15, 2007

PPMD Day 4: That's a Wrap


Part 4 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2007 Annual Conference, July 12-15, in Philadelphia.

I couldn't wait to get back to the hotel for brunch this morning. Maybe it was because I wanted one last chance to trade war stories with my new friends. Maybe it's that Pat Furlong, PPMD founding president is a superb motivator (as has been noted by at least one other person). Or maybe I was just really hungry. Whatever the reason, I managed to drag myself out of bed at 7:30 a.m. -- practically unheard of for me! My father, who accompanied me today, said that now that I have demonstrated that I can get up so early, I have no excuse for usually getting up so late. So I might never live this one down.

But that's okay because today -- and the last three days, for that matter -- were well worth the early wake-up call. All I've ever wanted to do in my life is to make a difference and that's what PPMD and each and every one of the 480-some people from 14 countries who attended this year's conference are all about: making a difference. It's exciting to be a part of something like that.

Whether we are parents, patients, doctors, researchers, nurses, researchers, etc., we're not about to stand idly by and wait for something to happen. As my father said to me afterward, everyone involved in PPMD seem to have adopted the 1960s philosophy of "power to the people."

With such resolve, it's only a matter of time until the goal is achieved...

4 comments:

Pat Moeschen said...

Josh-
You are so right. Glad to see that you got this up so quick. Don't sell yourself short. You are a motivator and a great person. I had fun meeting you and I have already told your train story to my buddy Jim. He wants to meet you and catch a Phillies game. Keep me posted. and Keep in touch, but most important, keep writing.

Krysta said...

Josh - I hadn't visited your blog in a while and thought I'd check it out today - ended up spending a long time there reading all of your new and very interesting updates! Love all of the photos too, nicely done!

Krysta

The English Courtesan said...

You do make a difference Josh. I say that as one who fortunately has no first hand experience of Duchenne's but you have opened my eyes. On Duchenne's, on being in a chair, on the Phillies, on so many things. So rest assured, you do absolutely make a difference...

Livvy xxx

Pat Furlong said...

Josh,
First off, I have to thank you for participating in the conference. You are right, the DMD community is a family with its crazy uncles and aunts, old-weird grandmas(me?) but down deep amazing wonderful people who care and are driven to change the outcome. YOUR presence was a breakthrough for us. For a long time we discussed inviting adults with DMD, but we were, frankly, pretty nervous. What would you say? How would you react? What would you think when parents said they did not want their sons to be in a wheelchair? Would that hurt? Would that make you feel uncomfortable? We wondered how parents with a new (or relatively new) diagnosis would react. Turns out our hesitancy was silly. We should have realized how important it is to unite the ENTIRE family, to have open communication, to ask questions of each other (yes, even about sex) and learn, learn together. It is the only way. Thank you! The expert panel was one of the highlights, not long enough I realize. So next year, you are on stage in the general session (breakout too), front and center with the docs., taking about care, about life, about what could make a difference. We are working out details (like hotel and date) but expect it to be back in Philly. Try not to repeat the near-death experience on the train...
Pat