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Dear Mackenzie,

My reaction to your inquiry is to instinctively suggest that you add a  third
choice to your poll ( I know, I am not following the rules. It's just the
maverick in me).  I'm referring to a national data base to be  maintained by
either the NIH, the Dept. of Health & Human Services or  the Center for Disease
Control.  It would require that  (with their consent) all persons diagnosed
with Parkinson's or a Parkinson's Plus syndrome be registered with this base
through their physician's office.  The information compiled  by this base would
include a thorough patient history in respect  to their familial connection to
Parkinson's (genetic background) and their  exposures to various toxins,
bacterial/viral infections, traumatic injuries to  the head, etc. (environmental
background.)  I feel that with  enough data from enough patients nationwide, we
could pin down a specific  cause or causes for these disorders.

This information gathering is already being done to some extent  but on a
much smaller scale and with a less centralized base than I am  suggesting.  The
work that has been done has  provided important findings of genetic mutations
carried  down through generations within families afflicted with  Parkinson's.
The ability to identify specific mutated genes which disrupt  the normal
functioning and ultimate death of the neurons involved in  Parkinson's may lead to
the development of drug and/or transplant  therapy.

On the invironmental/toxin side of the coin, work is being done  also.  The
U.S. Department of Health & Human Services has its "Agency  for Toxic
Substances and Disease Registry" The Army has a program to  research toxins and their
effect on military personnel.  California has a  state-run registry.  Do any of
these agencies collaborate on their  findings?  I don't know.  Should they?
I think so.  The  University of Illinois has their "National Center for Super
Computing  Applications" and I believe there are several such centers located
throughout  the nation.  Can they handle and process the data collected?  I
don't know.  Should they try?  I think so.

I know that there are obstacles: Money, patient privacy, busy  physicians
reluctant to participate, finding enough interest in this  approach to make it
work (possibly many universities and research teams  would be reluctant to
relinquish their own programs to one centralized  program), and finally, finding
the expertise to put this all together, the  knowlege to ask the right questions
for input data and the ability to  decipher and make the best use of the
output data.  It is  professed that in order to cure a disease, you must know its
cause. This  surely holds true for Parkinson's as well.

Ten million dollars.  How would I spend it?  If you could  prevent/eliminate
the cause of Parkinson's you would have eliminated the  need for both (1) and
( 2) so I would direct at least 5 million to a data  base. For those who need
treatment now, I would think that gene and/or stem  cell transplantation hold
the most promise as treatment for both 1 and  2 so, I suppose I would put four
of my remaining 5 million  toward that.

 With the remaining one million I would throw one,  big, nation-wide "HAPPY
HOUR" to celebrate and recover from the  exhaustion of figuring out how to
spend the original ten million.

Dee







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