Another great initiative by Tom Isaacs in the UK:

http://www.parkinsonsmovement.com/

excerpt: (visit the website for the entire text)

PARKINSON’S MOVEMENT is a new concept within the Parkinson’s community, based around the most important resource available — ourselves!

Nobody understands Parkinson’s better than us, the patients. Nobody understands the condition, the treatments and their side effects better than those who live with it every day. And nobody knows what we want from future treatments better than us.

We believe that Parkinson’s patients should take a bigger role in our own present and future treatment. And we will do this through knowledge, information and the sharing of collective experience. We need to learn about our condition, to manage it, to understand it and above all to take control of it. We need to fight ignorance and fear with knowledge and hope.

Tom is an icon for PD advocacy both here and in the UK. He is a brilliant writer and speaks with eloquence and knowledge. I believe the more we collaborate with other drug approval systems, the quicker we can experience "change."

Peg

that there are more involved - Jon Stamford, Sara Riggare & Tom Isaacs for PARKINSON’S MOVEMENT

I want to thank everybody in this thread for the appreciation you give to ** We value your opinions and want everyone who wants to engage in any way to share your views with us.

Sara
PARKINSON'S MOVEMENT

(I had a very nice link and a pretty Parkinson's Movement logo, but was not allowed to post either due to not enough previous posts... :-( )

Sara, my sincere apologies to you and Jon for not giving you credit in my initial post. As was pointed out I should have listed you as well!

http://www.parkinsonsmovement.com/

I hope all pwp will visit your website and join the movement!

Best, Jean

It appears to me that this is a great undertaking and worthy effort. However I do have a question or two. Once you gather enough knowledge, information and the sharing of collective experience, how do you get the medical community to take you serious and even acknowledge this effort? Is there really anything new being brought to the table here? I mean something significant enough to change the medical community's collective mind and change direction?

Please understand, I am not trying to be disruptive or negative in anyway. Just a honest question. In medical research and development of better drugs and treatments there has to be something significant enough to cause a change of direction.

GregD,

I understand your questions, and this is why I think that this team will make a difference to pwp:

Tom Isaacs speaks to groups around the world. On a page in "health unlocked" (part of the Parkinson's Movement website), he posted his thoughts on Sham Surgery as presented at a recent conference in Sweden. Tom is a world-reknown and highly respected PD advocate and speaker. When he speaks, people and orgs listen.

I truly hope it will become a recognized and respected place for all patient advocates to share ideas, to blog, to respond to blogs, to question, to create surveys, and to be heard. And finally, the folks behind this website will "... communicate our thoughts to opinion formers." It will become "the authentic voice of the community."

I believe this is what we have needed.

Jean

GregD, I definitely see your point and you raise a very reasonable question and I will try to answer you. The site was launched less than a week ago and we already received a lot of attention from both pwp and the scientific community. To be perfectly honest, it helps to have a person aboard who is a Parkinson's neuroscientist AND has PD himself (Jon Stamford) . I am not saying it will be easy to get acceptance and acknowledgement from the scientific community, but that is no reason for not trying and I think we have a fair chance. However, the three of us will never be able to do it on our own, we need all of you to bring your voices to the table!

Please contact us using the contact form on the site if you have questions, comments or suggestions!

Sara

Thank you Jean, no problems, in all fairness, Tom is the more known of us (so far)

Sara

Hi Sara,
Just wanted to welcome you to the forum, so nice to see you here.

It is good to see that Parkinsons Movement is taking off.

It is a great initiative, and very welcome. It will be good to see how it develops in the coming months and years.

Tom has, of course, been a member of this board for a long time, and has been the inspiration for more than a few people.

With three such advocates I am hoping for great things! I wonder if you could tell us a little more about yourself, and about Jon Stamford, as well as about Parkinsons Movement itself.

For me the difference between this and existing groups are, firstly that it is patient led and driven, secondly, that the intention is to build on Glasgow and draw people in from around the world, and third that right from the outset it means the dialogue to be between patients, science and medicine.

Wishing you and Parkinsons Movement all success.

Lindy