Has PPMD looked at the below data and asked NIH for the basis for such a decision

Smoking                                        $ 360M

Tobacco                                        $ 363 M

Alcoholism                                    $ 454M

Under age drinking                         $ 77M

Under age drinking prevention         $ 57M

Youth Violence                              $ 87M

Youth Violence prevention              $ 26M

Substance Abuse                          $ 30M

Duchenne/Becker                          $ 32M


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

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. 


 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.

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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