Ready for Some Football?

Ready for Some Football?

While living with DMD isn't the end of the world, I hope that one day, there will be a cure for young boys diagnosed with DMD so their muscles work and they can walk -- or even play football with their friends.

Making that happen was the goal of today's Inaugural Tournament to Tackle Duchenne Muscular Dystrophy. Under blue skies in Philadelphia's Fairmount Park, seven co-ed teams competed in two-hand touch football. A portion of their egistration fees as well as money raised from food and raffle ticket sales will go to Parent Project Muscular Dystrophy. So far, it looks like we raised about $1,200! If you would like to add to that amount, please click here.

None of this would have been possible without the hard work of my childhood friends Sarah and Ken. We would like to thank the folks at Philadelphia Sport and Social Club for coordinating the tournament, all of our sponsors, and everyone who participated, volunteered, or attended.

See you next year!

PPMD Day 1: Together Again

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.

Exciting Times

Exciting Times

Some things are truly worth the wait. Today, the New York Times story about DMD research and treatment for which I was interviewed several weeks ago finally ran. The article and video can be found here. I thought it was a great piece that highlighted the fact that without a cure for Duchenne's, doctors are now focusing on managing the disease, "making better use of available therapies to eke out longer lives for their patients." There is no doubt that it is this philosophy that has been responsible for keeping me around.

Naturally, I was most impressed with the video segment that ran with the story because it featured me! Just like the print article about me that ran in the Philadelphia Inquirer on Monday, the story was not overly dramatic, but offered an honest account of my life. Not only did it address the medical issues that I face, but it also focused on some of what I've been able to accomplish in spite of my disease.

Still, I would be remiss if I did not raise an objection to the part of the article that described how one boy, whose ability to walk appeared gone forever, regained that ability. While this is a wonderful thing, I think that parents often get too carried away with the fact that their son is going to be a wheelchair. Obviously, no one wants to be in a wheelchair. But the fact of the matter is that you can accomplish much in the wheelchair and I think it's important that parents of children with DMD, one of the audiences targeted by this blog, understand.

Today's world is becoming more and more accessible. And let me tell you, when I started using my wheelchair, it was a tremendous relief. Sure, I was able to walk before that point, but it certainly wasn't easy. I was terribly unsteady on my feet, constantly afraid of falling.

My point here is that, yes, we need to cure all aspects of this disease. But let's not forget that being unable to walk will not kill you, but the pulmonary, cardiac, and nutritional aspects of the disease will.

Perhaps with stories like the one that appeared in the New York Times today, hopefully one day soon, we won't have to talk about any such aspects of DMD because there will be an effective treatment for the disease.

A Pat on the Back

A Pat on the Back

Congratulations go out to loyal Winheld's World reader and my friend Pat Moeschen, who was recently named Wal-Mart's 2007 New Hampshire Teacher of the Year.

I first met Pat, who has Becker muscular dystrophy (which is closely related to Duchenne's), at the Parent Project Muscular Dystrophy conference a few months ago and was impressed with his positive energy and can-do attitude. No doubt these qualities are what make Pat so successful as a band teacher at the Woodbury School in Salem, New Hampshire, where he teaches sixth through eighth grades. For most of us, those years are often very difficult. I'm sure his students, past and present, will attest to the fact that a teacher like Pat can make all the difference. As someone with a disability, I know that every day presents its challenges. My hat goes off to Pat for facing those challenges head on and with great success.

Congratulations, my friend!