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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 >>>>> >>>>> ---------------------------------------------------------------------- >>>>> To sign-off Parkinsn send a message to: mailto: >>>>> [log in to unmask] >>>>> In the body of the message put: signoff parkinsn >>>>> >>>>> >>>> ---------------------------------------------------------------------- >>>> To sign-off Parkinsn send a message to: >>>> mailto:[log in to unmask] >>>> In the body of the message put: signoff parkinsn >>>> ---------------------------------------------------------------------- >>>> To sign-off Parkinsn send a message to: >>>> mailto:[log in to unmask] >>>> In the body of the message put: signoff parkinsn >>>> >>>> >>> ---------------------------------------------------------------------- >>> To sign-off Parkinsn send a message to: >>> mailto:[log in to unmask] >>> In the body of the message put: signoff parkinsn >>> ---------------------------------------------------------------------- >>> To sign-off Parkinsn send a message to: >>> mailto:[log in to unmask] >>> In the body of the message put: signoff parkinsn >>> >>> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: mailto:[log in to unmask] >> In the body of the message put: signoff parkinsn >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn