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Thanks for your encouragement, Mary Ann. I will keep on keeping on although at times I feel like we PWPs are like the knight in the Monty Python movie who keeps fighting as he loses all his arms and legs. No sooner do we come to terms with a new "normal" than PD takes something more. But what else can we do? -----Original Message----- From: Mary Ann Ryan Sent: Monday, January 27, 2014 7:16 AM To: [log in to unmask] Subject: Re: ProSavin gene therapy You are doing just fine posting all sorts of important information for PWP. Good for you, Ray. We all depend upon you so just keep on keeping on. :-) --------- Mary Ann ----- Original Message ----- From: "Rayilyn Brown" <[log in to unmask]> To: <[log in to unmask]> Sent: Sunday, January 26, 2014 7:10 PM Subject: Re: ProSavin gene therapy > Mary Ann > > Great you have such close family!! Medical clinic sounds interesting. > > I haven't down such a good job of posting since my research buddy, Diane, > died over two years ago. also my computer does some strange things > when I move the mouse and "click". Its harder to cut and paste now, but > I hope I won't miss real news. > > -----Original Message----- > From: Mary Ann Ryan > Sent: Friday, January 24, 2014 7:46 AM > To: [log in to unmask] > Subject: Re: ProSavin gene therapy > > Ray, life is good here. Jamie continues to be a part of our lives - my > grandkids sit in his recliner more than in any other furniture in the > house > so I think they feel his sweet presence. I volunteer once a week at a > homeless shelter - I run a medical clinic there. We still have the farm > and continue to plant a huge garden every year. My daughter and her > husband > plus their two kids live with me so I never feel alone. My son and > daughter-in-law visit frequently. > > It's good to see that you still are active in informing PWP about studies > and the need for advocacy. Thanks for all that you do. > -------- > Mary Ann > ----- Original Message ----- > From: "Rayilyn Brown" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Thursday, January 23, 2014 2:20 PM > Subject: Re: ProSavin gene therapy > > >> you're welcome, Mary Ann. How are you doing? >> >> -----Original Message----- >> From: Mary Ann Ryan >> Sent: Wednesday, January 22, 2014 7:31 AM >> To: [log in to unmask] >> Subject: Re: ProSavin gene therapy >> >> Thanks, Ray. This is great information and I plan on saving it for >> future >> use. It is frustrating that a miracle therapy is not on the horizon but >> at >> least you got the attention of this doctor so that the PD community can >> be >> better informed. Thank you so much for your effort. >> ------- >> Mary Ann (CG Jamie 68/28 with PD, died 11/20/07) >> >> >> >>> 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 > > ---------------------------------------------------------------------- > 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