 |
 |
Well, I'm rummaging around on the Internet in case of any overlooked clues to a fix - yes I know it's unlikely but can't do worse than waste my time, & given the amount of stuff now online , everything from weird religions to politicians' schemes, just maybe something's being overlooked ..... Amanda > Date: Wed, 29 Jan 2014 20:20:22 -0700 > From: [log in to unmask] > Subject: "keeping on" > To: [log in to unmask] > > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn