I know what you mean ! I do a lot of my computer use lying on the floor so I can steady my forearm on the floor. That does of course produce the problem of getting upright again. Is a tablet easier ? > Date: Thu, 30 Jan 2014 11:07:02 -0700 > From: [log in to unmask] > Subject: mouse speed > To: [log in to unmask] > > Amanda, we've already adjusted for mouse speed. Its me not the mouse. my > "fine motor skills" are nonexistent. > > -----Original Message----- > From: A Phillips > Sent: Wednesday, January 29, 2014 4:21 PM > To: [log in to unmask] > Subject: Re: ProSavin gene therapy > > It should be possible if fiddly to adjust the way the mouse reacts, eg make > it less or more movement-sensitive. > You might also find a bigger mouse easier (or even a smaller one if like me > you have small hands). > > > > Date: Mon, 27 Jan 2014 09:16:47 -0500 > > From: [log in to unmask] > > Subject: Re: ProSavin gene therapy > > To: [log in to unmask] > > > > 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 > > ---------------------------------------------------------------------- > 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