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
> >>>>>>
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