Mr. Fox has the final say,
yes, he will make more money, is he going to patent the drugs he supports?
and therefore be another pharmaceutical corporation?
there is a Bill on the Hill in DC right now according to my scientific people:

info: Parkinson's network,
it may be dealing with more money for gdnf research/
or autologus stem cell implants for PD - legalized and fully funded...
two very viable solutions to a cure, or at least a slowing down process
whatever -
I could careless to help the rich elete get free info!
especially when they think we are not able to think speak -etc...

whoop tee doo!
to them we are just Parkies -and we look like this to them

without listening, really listening to patients how will all the millions spent ever progress to a 'cure', especially when we differ so much..., we are a resource in ourselves, and unlike those taking that other and more feared neurological route, we are mostly intellectually intact, and able to chart the territory we are travelling.....

there is ignorance, and then again there is ignorance on a completely different scale........

perhaps it is time for the many to help educate the few

Tena, for a lab rat you have some quick hand movements....lol.

Other thoughts . A stress free, positive attitude comes from several sources and doesn't have to look like anyone else's picture. Lindy thank you for putting it so eloquently.

paula

That is a very good forum. The MDS I saw has posted there; he's primarily a researcher. (I found the forum when I googled him!)

I did not see discussions getting bogged down by patients' interacting with the scientists. That forum IS a very good model.

Tena, is that a rat or a mouse?

Cs, you make a great point. We all have the pleasure to deal with a variety of symptoms, specific to each of us, none of us the same. They talk about pleomorphic pathology. At autopsy they can see all of the differences we exhibit when they actually examine our brains.

Scientists know this, but they still lump as all together during clinical trials as if we all abide in the same box (cage).

Therefore, the trial results are suspect.

I'm fed up, but don't take action because I work full time. It's gotten quite difficult for me just to cope with daily life, such as it is. ( My assistant has been out another 3 weeks to care for her disabled son, so I'm swamped with work and don't have time to even read much of this forum.)

I often feel overwhelmed. I feel as if I hit and run here, and I apologize for that.

~Zucchini

...that a site dedicated to something as mentally devastating as AD welcomes patient input while a similar effort with PD which tends to have a "statistically significant" number of overachievers shuts us out.

Why can't we create something similar? We do have some things going for us. Doc John offers us a pretty good base to work from. We have enough scientific credentials to form a startup "scientific advisory board" to attract other academics to at least take a look.

I put in a few years on the board of a non-profit and learned there are three kinds of people needed to make one work. There are the donors of resources - in this case Doc John. There are the professionals who are the public "face" - in this case our "Scientific Asvisory Board." And there are the volunteers who get everything done - in this case the rest of us.

seems to me that there is alot of whining and complaining going on here. Knocking MJF after all the millions of dollars for research that he has brought in is pathetic.

Let us not be satisfied with just giving money. Money is not enough, money can be got, but they need your hearts to love them. So, spread your love everywhere you go.
QUOTE By Mother Teresa
non profits used to be called charitable organizations
many should not call themselves charitable institutions, because charity actually means "love".

unfortunately I do not have faith in Pharmaceutical Corporations...

I have known of PD patients begging on their death beds for help from Amgen
and those others who have humbly died with PD - I have had this crappy
illness long enough over 15 years, to see my dearest friends in my life...
die... and I too will pass away when it is my turn.

and the thing is we will all have our own ending in life , but we do not
want it to be with PD...
but to those PD patients that gave there all, to a clinical trial, and when the PD patients stepped out of there wheelchairs, to live!
Amgen stripped them of the GDNF and denied treatment and how many times
are we going to allow the drug dealers like Amgen to do this again and again...

study & research the history of BAYER/
http://www.profit-over-life.org/
http://www.profit-over-life.org/info...vor/index.html
http://www.profit-over-life.org/phot...D=25&expand=no
http://www.profit-over-life.org/phot...D=18&expand=no

or the Bristol meyers squibb pharma - where they found info to produce some of their first medical money makers... you do the research please
-
http://www.answers.com/the+history+o...ookup&nafid=27
from wiki an old ad
http://en.wikipedia.org/wiki/Image:S...ment,_1932.jpg

yes, it is unfortunate that MJFF decided not to include patients. No scientist or investor who is talking in that forum would have the same emotion, dedication and urgency to find a cure/atleast a drug to slow down PD than a patient. Many scientists I know have research projects on diseases, they know all about them, symptoms, statistics, cost for treatment etc but never ever met a single patient suffering from the disease s/he is working on, I was like that before my diagnosis with PD. I am a researcher working on vaccines for HIV. In a conference (organizers invited patients to join in) one patient asked me a simple question after my talk. The question/comment was "yes, you have great data, wonderful vaccine and you have cured mice of AIDS. But what about me, when will i get the benefit of it? When can I get the vaccine?"
My immediate thoughts were well its going to take time, we still have to do this and that, we need more money and a little more time etc etc .................... At that time, mY focus was on the research project NOT ON THE PATIENT. I thought I understood the urgency and need for a vaccine, but I wasnt even close to it. Only the guy with AIDS knew how important and critical it is for him and with one question, he opened my eyes. Soon after that, I found out about my PD and then, only then I understood that question and what it meant. The urgency and the need for a cure NOW and the frustration that it takes too long to get a good candidate from bench to bedside and the fear that it might not happen at all.............only a patient understands and listening to him/her is entirely different from reading it in a book.
sorry......... too long a message....

Bottom line is patient input is valuable in many ways. While I agree with Rick that some of us with < "dual qualifications" could be there and bring back the info to this forum, some sort of patient participation is needed. If we are vocal about it, it will happen. lets try \

Girija

It is one of the jobs of the MJFF to raise funds and they do it very well; outstandingly. They are well paid. But success can't be measured only in terms of money and this is a difference of opinion about strategy. Differences in opinion can be productive, but I find no one pathetic in this thread.

paula