Thread: The MJFF
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Old 09-30-2012, 08:11 PM
1990nyboy 1990nyboy is offline
Junior Member
 
Join Date: Jun 2007
Posts: 34
15 yr Member
1990nyboy 1990nyboy is offline
Junior Member
 
Join Date: Jun 2007
Posts: 34
15 yr Member
Default A few things to add

I was moved to respond to this thread for several reasons:

1. I do extensive healthcare research (some on PD) with NIH support;
2. I also get pharma company support
3. My wife and I make substantial contributions to MJFF each year

Overall research is slow and painful. I often wish the cure for PD was as simple as finding the single agent that completely reversed Parkinson's. I am convinced that we will eventually get to a cure, but PD is a complex disorder and may even be a set of disorders currently being called the same thing. (Think--a "cure" for cancer. There are multiple types of cancer and there are multiple agents and approaches used for different cancers.) Although I thought differently when my wife was first diagnosed with PD 9 years ago, the "cure" for PD will probably come through a series of smaller breakthroughs and paradigm shifts. The last, best such change came to PD in the form of DBS and we are all waiting for the next big thing.

Having worked with the pharma industry for 15 years, there is no pharma company that I know of that wouldn't want the breakthrough drug in an area like PD. There is a big market that is getting bigger (unfortunately) and the company that has the first to market game changer product will have a blockbuster. Do you think that anyone is making serious money on generic carbidopa levodopa?

National Institutes of Health (NIH) is contributing to PD research, but total NIH budget for all disorders together is really quite small (about $30 billion requested for 2013--the NIH Institute focused on neurology and all neurological problems gets only $1.6 billion for all of these problems not just PD.). When you compare this to all military expenditures for the US requested for next year (about $1.2 trillion) you can understand why getting NIH grants is a lot harder than getting money for building new military equipment.

Lastly, I want to mention that MJFF is trying to do a lot with their resources in multiple promising areas. There is no value in getting angry at them. They do a fantastic job for all of us affected by PD and should be applauded.

pwpboy is obviously frustrated with the slow pace of things, but making scurrilous remarks is unhelpful and given the nature of the internet can ultimately be destructive to the process that all of us wish for.
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