Hi Swept,
Glad to see you posting here,
and good to know that the connections we all made in Glasgow
can be sustained and built on......

It was fun meeting you, and hope to hear more
from everyone as we take away the message of global domination!!!!

Keep on posting

Lindy

I must have missed you posting here before, but I sure am glad to are with us.

Peggy

Good to see you here, Bryn.

I wonder if there is a link to footage of your speech, I know the cameras were rolling, and it would be great if PwP everywhere could see it.......

Lindy

Swept you say you are 50 but you look 30. What a lovely lady you are. And Bryn, you said all the right words and with eloquence; I saw no shaking. I was very glad to have met you both.

girija,
it's a tribute to this forum and your keeping up with research yourself that you didn't learn anything new. There isn't anything new. Thus our distrust over all the money spent and the fact that there are sinemet shortages, among other things.

I have never met a friendlier group of people and the Scots are the friendliest nation on earth. Wonderful people. Tom Isaacs and Cure Parkinsons Trust are sincere and worked very hard to make the world congress for everyone, not just medical and pharma attendees.

I applaud their efforts.

paula

For all those who attended, (and those who are reporting back)

THANKS SO MUCH FOR REPRESENTIN'!!!

Despite being a member for a couple of years, I haven't posted here before. It is good to see this has developed into a vibrant place.

I have looked at other forums and am surprised by the lack of interest in the Congress, so it's good that you discuss it here. But then I think: Congress #2 means there must have been a #1, wonder where it took place? Apathy is a symptom of our disease, how do you motivate the apathetic? So perhaps I should not be that surprised.

I can confess I almost didn't go, and I live a mere 15 miles away from the Conference Centre. Am I glad I went? Yes. It was well run and those involved deserve a pat on the back. Meeting people affected by PD was the highlight for many of us.

Am I filled with hope? Alas no.I discovered the wheels of medicine grind slower than I feared.

An example - a group played by real people play acted their role in the life of a new drug from point of discovery to when first available to patient. On stage were a politician, neurologist, pharma, approval authorities (plural), patient organisation and a very pushy patient (Tom Isaac playing himself?). It managed to amuse and anger.

It turns out that from point of discovery of a new medication to the pill finally being released to our well informed, eager patient, prescribed by his progressive neurologist, 13.5 years have elapsed. I'm late 50's; at that rate I will be early 70's before I can hope to benefit from today's discoveries.

The discussion following pointed out the obvious; the processes are carried out in strict order, one after the other, whereas there is scope to run some processes at the same time. This was said to be under consideration; for example, the approval processes running in parallel. Even better, involve the approval guys at an earlier stage in trials. I question why this hasn't happened already. For our sakes, do it, don't discuss it. Take a lead from industry; you wouldn't survive a day if you ran a business like that.

Consider for a moment the cast. This was not a cynical play put on by rebellious patients. There is a strong message from these guys that this is unacceptable. They could do better for us.

I know that safeguards are there to protect us, that is good. But delay in bringing effective treatments to patients prolongs our suffering thereby increasing it, that is bad. It's a balance. Who decides the correct balance? What say has the patient?

Several speakers talked of engaging the patient. I feel we are being sent a message here, a message we should listen to.

We just aren't enough to do it all but want to. Will you help? i'm in exactly the same timeframe as you but have had it 20+ years. I'm part of a team and we can each do something , we are experienced so we need to get together on line [Skype} and communicate.

let me know if you are wanting to participate in some capacity in what, we hope, is to be a community based website for creative advocacy.

paula

Grey, WPC #1 was in Washington, D.C. in 2006.

I attended that same role-play that you mentioned. I came away very frustrated, annoyed, and angry by the bureaucracy that is in place to "protect us patients."

Jean

I agree with Paula, the people in Glasgow were very welcoming and kind! But I confess I had trouble understanding their spoken English!

Bryn Williams of wobblywilliams.com is/was amazing. His speech at the opening ceremonies received a standing ovation. I read on Twitter that it was recorded and in a couple of weeks will be available on line. I hope so! I want to see it again and hope that others will be able to see it as well.

Tom Isaacs seemed to be everywhere - presenting thoughtfully and always with humor. He is downright brilliant.

The quilt was beautiful. The feeling and emotion I got from looking at the different squares has stayed with me.

You can view some photos of the WPC here.

Jean

Why not a strong emphasis on off label use of already approved drugs. Since they have already passed through the hoops, they could be quickly deployed.

We PWP could help by combing the literature. I can give you two examples right now- the Exendin that Tom is probably quaffing as he sits across the table from his "special" gila monster is one. Another is methylene blue that has slipped back into the shadows.

Debi, if you are out there, this is the most cost effective way to bring these new drugs to market.