If you want non-medically qualified help (e.g. looking up information on the internet),
I've got time on my hands  (and know the meaning of confidential).
 
> Date: Fri, 24 Jan 2014 08:24:00 +0100
> From: [log in to unmask]
> Subject: Re: ProSavin gene therapy
> To: [log in to unmask]
> 
> Dear friend,
> 
> of course, I'll do it. If you have any question dealing with PD 
> research, please feel free to contact me at any time.
> 
> best, Jose L.
> 
> A Phillips escribió:
> > Jose -
> > Please keep us informed - you can't imagine how keen we are for news.  
> > Even negative news - and don't worry about intimidating jargon; we 
> > can always look it up.
> >
> >  
> >   
> >> Date: Wed, 22 Jan 2014 08:49:04 +0100
> >> From: [log in to unmask]
> >> Subject: Re: ProSavin gene therapy
> >> To: [log in to unmask]
> >>
> >> Dear Rayilyn,
> >>
> >> I perfectly understand your current situation. Although I have been 
> >> trained as MD, I have never treated patients since I am engaged 100% in 
> >> PD research. I am in close contact with the Spanish association of 
> >> Parkinson's disease, and I strongly feel that one of my obligations is 
> >> to explain the patients what's going on in PD research. I know that it 
> >> is fustrating to see that anything new has arrived in the past few 
> >> years, besides some minor improvements in dopamine-replacement therapies 
> >> (if I am right, a phase 2 trial testing an inhaled preparation of 
> >> levodopa is going to start soon in US). When attending scientific 
> >> meetings, the overall feeling is that everybody is always moving around 
> >> the same topics, without any real new improvement or any real new ideas 
> >> to follow. In this regard, gene-based therapies such as ProSavin at 
> >> least represent something different. I cannot anticipate how long will 
> >> it take to see these new arrivals fully available in the market as a 
> >> therapeutic tool. Nevertheless, I still thinking that approaches this 
> >> kind at least represent something different, and I am sure that this is 
> >> a right step in the right direction. In the past two years my group has 
> >> received some EU funding to start testing different approaches of gene 
> >> therapy for manipulating basal ganglia circuits. We are using 
> >> MPTP-treated monkeys since these represent the best animal model 
> >> available so far, and working with monkeys speeds up the time required 
> >> to start testing new tools in humans suffering from PD. I can give you 
> >> my word that we are working very hard trying to generate the expected 
> >> results asap. We have just started several experiments, all very risky 
> >> approaches, and therefore I cannot anticipate any final result. 
> >> Nevertheless, you can be sure that the situation of PD patients always 
> >> is very well represented in my mind at all times.
> >>
> >> I know that it is not easy to be optimistic in the current scenario. 
> >> However, my personal feeling is that testing some new research avenues 
> >> has just been started. There is too much pressure to go traslational, 
> >> and to start testing new approaches in patients asap. This pressure 
> >> implies that some promising things enter clinical trials too early, and 
> >> therefore it is fustrating to see that most of these new therapies 
> >> failed in clinical trials. Just simply remember the failures of GDNF and 
> >> nurturin. These are very good examples of promising things that failed 
> >> because by the time these get tested in humans, we knew very little 
> >> about their function. For instance, by the time in which GDNF entered 
> >> phases 1-2 (the "Kentucky" and "Bristol" trials), we didn't knew too 
> >> much about the neurobiology of GDNF. Researches we have to deal with 
> >> this pressure, that's life. However, my feeling is that we cannot 
> >> generate any solid expectances for PD patients without a clear 
> >> proof-of-principle. As I have mentioned before, some failures we have 
> >> seen in the past easily rank within this category of things being tested 
> >> too early.
> >>
> >> According to the published results from ProSavin, this might not be seen 
> >> as the way to go. My opinion is just the opposite. Although I will have 
> >> been delighted to see a better clinical outcome, the important argument 
> >> of ProSavin is that approaches this kind at least opens new vistas in PD 
> >> research. I can perfectly understand that you are tired of getting worse 
> >> and waiting. I just can tell you that everything that me -and many 
> >> others- we are currently doing is done bearing in mind at all times the 
> >> clinical situation of thousands of PD patients. You are our main 
> >> motivation, and this is how things should be. Of course I cannot promise 
> >> any miracle, just a tireless effort in PD research, every day.
> >>
> >> All the best and have a nice day, Jose L. Lanciego
> >>
> >> Rayilyn Brown escribió:
> >>     
> >>> Jose
> >>>
> >>> I've had PD 18 years, have gotten worse, am 78 years old and fear at 
> >>> the present pace of research will not live long enough to benefit from 
> >>> any of the 'promising" treatments on the horizon.  I'm tired of 
> >>> getting worse and waiting.  But then I'm anemic, maybe that’s it.
> >>>
> >>> -----Original Message----- From: José Luis Lanciego
> >>> Sent: Tuesday, January 21, 2014 3:06 AM
> >>> To: [log in to unmask]
> >>> Subject: Re: ProSavin gene therapy
> >>>
> >>> Dear Rayilyn,
> >>>
> >>> I guess this is not discouraging at all. Although this is a preliminary
> >>> study, my feeling is that ProSavin represents a right step in the right
> >>> direction. A number of gene therapy experiments are currently undergoing
> >>> and we will see what's coming out in the next few years. Indeed, this
> >>> approach -and few more under experimental implementation- is something
> >>> different, e.g., it is not based on dopamine-replacement strategies. My
> >>> laboratory -as many others- strongly feels that many new arrivals can be
> >>> expected from gene therapy experiments, with the ultimate goal of using
> >>> gene therapy tools to manipulate basal ganglia circuits. Compared to
> >>> cell therapies, gene therapy seems to be a much more feasible and
> >>> realistic strategy.
> >>>
> >>> All the best and have a nice day, Jose L. Lanciego
> >>>
> >>> Rayilyn Brown escribió:
> >>>       
> >>>> discouraging isn't it?
> >>>>
> >>>> -----Original Message----- From: Nic Marais
> >>>> Sent: Saturday, January 18, 2014 12:29 AM
> >>>> To: [log in to unmask]
> >>>> Subject: Re: ProSavin gene therapy
> >>>>
> >>>> When you read the Viartis notification, it does not look as positive as
> >>>> this article...
> >>>>
> >>>> http://www.viartis.net/parkinsons.disease/news/140113.htm
> >>>>
> >>>> Nic 61/19
> >>>>
> >>>>
> >>>> On 17 January 2014 21:18, Rayilyn Brown <[log in to unmask]> wrote:
> >>>>
> >>>>         
> >>>>> http://www.domain-b.com/technology/Health_Medicine/20140115_patients.html 
> >>>>>
> >>>>>
> >>>>> Ray
> >>>>> Rayilyn
> >>>>> Past Director AZNPF
> >>>>> Arizona Chapter National Parkinson Foundation
> >>>>>
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