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What will tomorrow look like?

When I was growing up, we had a lovely babysitter who started every meal with a prayer she learned as a child, but changed or added to because she looked at things in a different way. “The Lord is my shepherd, I shall not want… but I do,” she would say. She would look at all of us with a funny grin and talk about her laundry list of needs. There was a great deal she wanted. It still makes me smile to remember Ellen and her very honest approach. I can I still hear her words and see that silly… Continue

Added by Pat Furlong on May 21, 2008 at 2:29pm — 6 Comments

Wellstone MDCRC meeting 2008

As the public member of the Paul D. Wellstone Muscular Dystrophy Cooperative Research Center Steering Committee I attended the annual "face to face" meeting recently hosted by the University of Rochester Center in Rochester, NY. A little background might be helpful as many in the Duchenne community may not realize that as mandated by the MD CARE Act of 2001 these Centers are focused on research for the nine known Muscular Dystrophies including Duchenne, Becker, Limb Girdle MD,… Continue

Added by Brian Denger on May 16, 2008 at 9:12pm — No Comments


When my wife and I learned my sons had Duchenne Muscular Dystrophy it was like someone threw a wrench into our world. The questions came faster than the answers. For example, how are we supposed to go to work, breath or resist the urge to pull our sons out of school and just hold them? Well, as many of you know there are no answers others can provide. All truths must come from within based on who we are.

So, how do families learn to cope with a diagnosis like DMD and avoid going over… Continue

Added by Brian Denger on May 10, 2008 at 9:43pm — 2 Comments

Points to Ponder By, Pat Furlong

What messages do we send to our sons, to our friends, to our family? When Duchenne muscular dystrophy (Duchenne) enters our homes, all of us change. What we think changes. How we communicate changes. And maybe, just maybe, our communication changes in light of the hope we have on any given day.

Sometimes I hear themes that frankly worry me a bit and since this is my blog, I thought I would bring them up simply to think about. Nothing more.

I do know we are all waiting…… Continue

Added by PPMD on May 1, 2008 at 9:30am — 4 Comments

The voices from within.

Most people who know me also know I run a little. O.K., maybe a lot. Last year I ran over 2400 miles. When I travel the first thing I usually do prior to leaving is map out a few places to run and speak with people in the area about the best places. In 2007 I ran in twelve states and in Canada. It must make me seem a bit compulsive, but that's me. What started as seeking a bit of exercise has morphed into a fund raising tool and an opportunity to reflect.

My typical run lasts about… Continue

Added by Brian Denger on May 1, 2008 at 9:13am — 1 Comment

December, 2007 Update (St. Louis Children's)

Bradley's St. Louis appt. this month went well. The student doctor commented that Bradley seemed more like a child with Becker Muscular Dystrophy than Duchenne Muscular Dystrophy. For those that don't know, Becker MD is a milder version of DMD. The neurologist said we should not ignore the fact that the muscle biopsy done when Bradley was 3 years old indicated DMD. There are varying degrees of both DMD and BMD. I am hoping Bradley is borderline between the two. I doubt we will be doing any…


Added by Lisa Jones on December 24, 2007 at 2:00pm — No Comments

August 2007 St. Louis Cardiologist Visit

Bradley had a cardiology visit this week but I'm not sure what to do about starting lisinopril. The cardiologist does not advocate starting it before heart changes appear. He said he was disappointed in our neuromuscular doctors for giving credibility to one study showing lisinopril can help prevent cardiomyopathy. It may be he didn't like another doctor making recommendations in his field of expertise. He also is adament that it is very unusual for heart changes to appear in a child with…


Added by Lisa Jones on August 12, 2007 at 3:30pm — No Comments

June, 2007 St. Louis Children's Hospital Update

Just wanted to update everyone on Bradley's St. Louis Children's MD visit today. He is doing well for being 10 years old. We talked about the chest pain he has been having. I told him the Family PA had ordered an echocardiogram and it was normal. I also told him it was concluded that he has stomach…

Added by Lisa Jones on June 12, 2007 at 3:30pm — No Comments

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