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I am asking list members for help in locating participants in the 
phase II GDNF trial, 2003-2004. We are especially hoping to find 
partcipants from the Toronto area. These folks could hold one of the 
keys to resolving one of the most controversial science questions in 
the Parkinson's community.
 
You may be aware that this controversy has been going on since the 
GDNF trial was halted by Amgen two years ago in September 2004. Many 
of the participants had benefited greatly from this treatment and 
were devastated by the halt.  The researchers are in disagreement 
about it, but slowly more and more researchers are agreeing that the 
Amgen's Phase II trial results were inconclusive, not negative as 
originally stated and that further research on pump infusion delivery 
of GDNF should proceed.
 
There are Phase II trial participants who still have their equipment 
in, hoping for it to be reinstated.  
 
These participants and other parkinson's advocates have been trying 
to convince Amgen to repeat the trial, and provide compassionate use 
to the original participants.  

WHY are so many patients so adamant about resuming  GDNF trials? Many 
of the trial participants say it saved their lives. Besides improving 
symptoms it is neuro-restorative and neuro-protective. For PWP with 
moderate or advanced PD, GDNF may currently be our best hope for the 
future.  Stem cell therapy is very promising, but is many years away 
and so is gene therapy, while GDNF which could have been in phase III 
clinical trials by now, sits on the shelf at Amgen instead.

If you know someone who was in this trial or if  you belong to a 
support group in Ontario or know others who do,please forward this 
information to them. Perhaps one of their members was in this trial 
and would fill out  a profile about their trial experience on the 
Grassroots Connection website.  THEY CAN FILL IT OUT ANONYMOUSLY AND 
DO NOT HAVE TO LIST THEIR TRIAL CENTER.  
We would like to show Amgen how the treatment and trial halt affected 
real people. Their experiences tell far more that statistics ever 
will. 

GRC website:  http://grassrootsconnection.com
 
here are the trial participant profiles received so far:  
http://grassrootsconnection.com/gdnf_profiles2006/participants.htm
 
here is the profile form to fill out: 
http://grassrootsconnection.com/GDNF_profile2006.htm
 
here is the history since the halt:  
http://grassrootsconnection.com/grcissue_GDNF_research.htm
 
http://pdpipeline.org/yy_advocacy/opeds.htm#_Believe_     
excellent summary!  much more also on this site
 
trial participant site:  http://gdnf4parkinsons.org/
 
Please contact me if have questions or want more information.
Thanks,
Linda Herman

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