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Friday, July 18, 2008

PPMD Day 2: Meet and Eat

Part 2 of Winheld's World coverage of Parent Project Muscular Dystrophy’s (PPMD) 2008 Annual Conference, July 17-20, in Philadelphia.

One thing I have found about attending conferences is that you do a lot of eating! I certainly did plenty of that today. In between, I met many people (here I with Donna, of Austin, Texas, a big fan of my book) and participated in some very important panels.

First, I was part of a group of medical professionals and patients that discussed issues relevant to the adult population with DMD. Respiratory and cardiac considerations were the focus of the discussion -- I told the group that "I have had pretty much every intervention that exists" -- although we also talked about social issues. The discussion went so well that the hour-long session nearly stretched another full hour.

Personally, I was amazed at how far treatment of the disease has come. Now, some doctors are putting their patients with DMD on the same cardiac drugs that I credit with keeping me alive -- much earlier. Non-invasive ventilation (NIV) has also become much more commonplace. Do I wish that I had such interventions in the years prior to my entering adulthood? Perhaps. But there is so much that medical professionals have learned in recent years that was not known when I was coming along. Even so, I have been able to live as long as I have lived because the doctors treating me did what they knew how to do at the time to save my life -- and it worked.

A few hours later, I participated in a panel of adults with DMD that met with a doctor from the U.S. Food and Drug Administration (FDA) to discuss our views of risks/benefits and desired outcomes of potential clinical trials for DMD interventions. For those of us in the later stages of the disease, being able to keep walking is obviously not the desired outcome, as we have been non-ambulatory for years. So our views are different from those of the parents of younger children with DMD.

The fact that someone from the FDA wanted to meet with adults with the disease is a significant development. For far too long, it seemed that the adult population with DMD was being all but ignored. I found it to be a very emotional meeting because we had a chance to say what has been on our minds for years. I concluded my remarks by telling the doctor the story of how I listened to a father of a young child with DMD at last year's conference plead for help so that his child would not end up in a wheelchair as if that was the worst thing in the world. "Well, what about us? If there's anyone who should be desperate, it would be us. We are much closer to the end of the line and just want to live our lives."

By the end of the meeting, I was completely spent -- and hungry. But first, I met with the other adults on the panel on which I will be speaking tomorrow afternoon to prepare our remarks. The truth of the matter was that we did not need a whole lot of prep time. We have some sharp minds in the group (except for me!) and we're going to do a great job tomorrow.

My long day came to its conclusion with a nice relaxing meal at a nearby Italian
establishment with my wicked funny pal from New Hampshire, Pat Moeschen; (from left) his girlfriend, Ashley; my nurse, Frank; and Pat's mother, Helen . I don't know where the guy gets it from, but even after a long day, Pat still had his usual sick sense of humor!

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