Featured Blog Posts (384)


Staff
What't the deal on Losartin

You are all aware of the Losartin paper by R. Cohn and colleague and like many other drugs/supplements/nutraceuticals, we continues to discuss this within the community and ask various physicians to prescribe Losartin for our boys. And some parents are giving it to their son, with or without the blessing of the physician. So, the botton line is that there is no evidence other than on study on the mdx mouse. And you have already heard the words, "there is a great deal of difference between the… Continue

Added by Pat Furlong on October 13, 2008 at 10:22pm — 26 Comments


Staff
Advocacy

These last few days have been pretty wild. On Tuesday, the Paul D. Wellstone MD CARE Act passed the House of Representatives and sent to the Senate. For the last few days, PPMD, Cornerstone and Senate Committee staff have been in contact, negotiating and working to move the Bill forward. Today at 10:50 AM, we are on pins and needles waiting, hoping for good news that the Bill has passed the Senate. The bill then moves to back to the House and on to the President for signature. This has been an… Continue

Added by Pat Furlong on September 26, 2008 at 11:13am — 3 Comments


Staff
Conference Recap -Part 2.

Sitting in on the research sessions must feel a bit like betting on horses, feeling the need to take a side, pick one or perhaps two approaches and make some determination about the likelihood for success based on certain data. And it appears so much depends on the ‘code’ – the specific mutation, the particular horse you think is likely to win and where what will be required in terms of function in order to be a candidate for trial.



And then the word ‘clinical trial” is tossed around… Continue

Added by Pat Furlong on August 7, 2008 at 8:15pm — 3 Comments


Staff
PPMD Conference

After 14 years of holding conferences, writing a review should be relatively easy and in some ways it is. Parents and family members gather to learn, to find something, to understand better, to gain strength. Some are new to the diagnosis, the word Duchenne muscular dystrophy a recent addition to their vocabulary. They are raw, tender, bruised and brave making the decision to attend and commit three days of precious time. It is amazing to me to see the community, sitting, attentive, at times… Continue

Added by Pat Furlong on July 30, 2008 at 3:44pm — 7 Comments

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