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May 2008 Blog Posts (6)

Staff Steroids and Duchenne

Steroids are now 'gold standard' in Duchenne. While many physicians recommend daily regimens, there are still others who suggest alternate regimens. Data from the recent CINRG trial comparing weekend dosing to daily dosing suggest nearly equal benefit. But to be fair, the trial is not following the boys long-term to understand if the age of loss of ambulation varies from daily to weekend dosing.

And while steroids do offer considerable benefit, there is also considerable risk. Sadly,… Continue

Added by Pat Furlong on May 22, 2008 at 3:00pm — 1 Comment

Staff 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

Balance

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

Staff 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