Dystonia Funding vs. Other Movement Disorders

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Many people are interested in research.  Is there much being done along this front?  What are the projects being done?  Is it helping?

It’s hard to give you answers along those lines but, suffice it to say, there is some research being done.  What it is and where it’s being done, we don’t really know.  Research, for simplicity’s sake, can be divided between private companies/groups/projects vs the government, mainly the National Institutes of Health (NIH).

One thing that is interesting is how much is being funded for Dystonia vs what’s being done for other movement disorders.  To give you an idea of just how much money is being spent on various research projects we went to an internet site labeled “NIH RESEARCH PORTFOLIO ONLINE REPORTING TOOLS (REPORT). The table was published February 13, 2012 and represents years 2009 through 2012 (last year being estimated).

We will list the years 2010 and 2011 (actual) to give you an idea of what’s actually happening.  The major movement disorders would list out as follows:

2010              2011

ALS (Lou Gehrig’s Disease)      $12 Million      $44 Million

Cerebral Palsy                       $3 Million        $23 Million

Deprssion                             $50 Million       $426 Million

Epilepsy                               $27 Million       $152 Million

Huntington’s Disease               $7 Million        $56 Million

Multiple Sclerosis (MS)             $18 Million      $122 Million

Muscular Dystrophy                 $12 Million      $75 Million

Myasthenia Gravis                   $3 Million        $9 Million

Parkinson’s Disease                  $18 Million      $151 Million

Tourette’s Syndrome                $ Zero           $5 Million

DYSTONIA                             $1 Million        $13 Million

You can draw your own conclusions from what you see here.  If you go the actual tables there are asterisks and various disclaimers noted but this provides an approximation of the amounts given for actual research projects within the federal government.

YOU WILL NOTE THAT DYSTONIA DOES NOT REALLY RECEIVE ANYTHING THAT’S ENOUGH TO WRITE HOME ABOUT.  We don’t receive our fair share and that is a big crisis for all of us.  It should provide impetus for all to write your congressman and senators and discuss it further.  Much of this goes back to the figures of prevalence of just 83,000 people having dystonia. WRONG! WRONG! WRONG!  These figures have to be AND SHOULD BE changed.


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