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Permalink Reply by Ofelia Marin on February 15, 2012 at 9:33pm

Wow, Smoking and drinking...terrible diseases. I feel so bad for these people who CHOSE to smoke and/or drink! :( 

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StaffPermalink Reply by Ryan Fischer on February 16, 2012 at 10:34am

Hello Tulika,

We have always advocated for more research dollars through the NIH, in truth the money that has been invested by the NIH has then gone on to leverage millions in the private sector.  I too think there should be more money appropriated to Duchenne/Becker research and that is all the more reason to have parents, families, friends, get active in advocacy. 

Nearly 20 Duchenne candidate therapies are in various stages of the clinical trial pipeline today, and another dozen-plus are in earlier stages of discovery. Many of the research projects responsible for achieving the initial breakthroughs that led to these candidates were supported by NIH funding. 

It is never enough and i completely understand the frustration over the amounts spent on substance abuse. What we need to continue to do is raise our voices and tell our story to Congress. We work hard lobbying Congress every year for that investment and for a rare disease we can take some pride in what's been accomplished. With all the noise and competing  voices in Washington we must continue to fight for every dollar. 

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Permalink Reply by Tulika on February 16, 2012 at 12:50pm

Ryan,

 Perfectly understand and appriciate the need for us to be more proactive on advocacy.

However does NIH explain thier position on such a apparently ridiculous position. As the frontal organization on parental activism, can PPMD ask NIH to make a formal statement and explain the basis for such decisions.

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Permalink Reply by Jason Darienzo on February 16, 2012 at 3:15pm

I don't mind the NIH spending money on smoking and tobacco, but if you look through some of the studies there is a lot of junk science and huge overlap between these two identical categories. NIH should be above helping congress get votes and base there funding on scientifically valid studies.  There is more than enought money for rare disease, if the money for the junk were reallocated.

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