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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