okay, here's the new plan:
we are going to get 1,000,000 signatures around the world.
One million
Are Parkies on the bus, or off the bus? (I won't be the driver, so have no fear.)
plse post petition wherever u can.

Bob .& all
 

Bob
I think you hit on something very important. I was definitely not thinking when I suggested a professional group be put in charge of something that relates to their income.

I stand corrected. .We Should sign the petition.

But also, de we must have people sign up for clinical trials! Type "Fox Trial Finder" in your browser and it will take you to where everything is explained about how to get started.
Peg

Next: go worldwide for a million signatures; hassle every government relentlessly
 

via pharmatimes.com

The AllTrials transparency campaign is at a crossroads and is looking to take the next step into becoming a larger force against the restriction of clinical trial data by pharma.

Sir Iain Chalmers – co-founder of the Cochrane Collaboration – said this week that transparency has been “mired in 25 years of false promises and failed initiatives” and backs the AllTrials initiative...

It has gained big names and big backing – including over 80 patient groups, NICE, IQWiG, the BMA and, most importantly GlaxoSmithKline (although no other pharma firm or lobby group, at time of publishing). In all, 40,000 people have now signed the AllTrials register.

But despite its success… the “impetus for change could now go either way”...
“There are many who hope that AllTrials will fizzle out and go away, as previous efforts have done - what happens next is up to all of us. We need your help to grow internationally, and to push for a decisive and permanent change.”

Specifically, the campaign wants 1 million signatures on the register, adding that with every 10,000 new signatures, the campaign will send the petition to health ministers in every country, and to regulators.

It also wants more international groups backing AllTrials and is asking those who have already signed to write to medical associations in every country to get them to sign up to the campaign.
http://www.alltrials.net/

Bob
 

I signed and posted link on my Facebook page.
Thx
Peg

thanks, Peg. But Parkinson's Action Network ? Any action?

Did this get transmitted ?:
http://www.ted.com/talks/ben_goldacr....html?c=540521

This was done thru this site
http://www.alltrials.net/

It had nearly 46 K signatures n when I signed AllTrials

Peg, you are once again posting at 2:30 a.m. when you are supposed to be sleeping. It's the Mirapex, Peg,, it's the Mirapex.

46,000 signatures is a good start. If they would each send me a thousand dollars, we could stop now. It's hard to get rich quick the way AbbVie does.

But, Peg, thank you greatly for signing . You are one of the founders, the icons,, of patient advocacy and allowing unknown people to do unheard of experiments for which you volunteered your living mind and your living body.
YOUR SIGNATURE IS WORTH A THOUSAND LETTER-HEADS FROM ORGS OR CORPORATIONS.
May be they got AbbVie, but we got Peggie

For you Newbies to PD out there, here is a history lesson. This is Peggy Willocks, sending out an open letter, in 2005.
http://www.pdpipeline.org/2011/Advoc...pants_gdnf.htm

Bob
 

GAWSH! You are making me turn red-faced, Bob. I am not that special, just a near desperate person who has lived with this disease for nearely 20 years.

I will tell you this - since 2005, I have volunteered for numerous drug companies (sponsors of cllinical trials) and have remained outspoken for the "patient" voice - hereafter referred to as the person with Parkinson (PwP voice).
Not ALL drug companies or big pharma sponsors are out to get you; some are not out to deceve you, yet they are far and few as the drug market is a megamillion market.

I am but one voice, and I admit that I have built a reputation as a leader in advocacy, BUT collectively WE ARE OMNIPOTENT! Nothing can stop us if we stick together. Take this cause that Bob has presented here. We can get thousands of volunteers to sign up for clinical trials, but if the published findings are presented so that results are misconstrued or presented with bias, the trial has no meaning at all, and your willingness to volunteer is useless.

WE MUST DEMAND ALL RESULTS be presented upon trial completion (and within a reasonable time), whether the trial was successful or not. We learn from faillures. Some companies fear that patients will misread the results; then have the sponsors rewrite results in language we can understand. And don't think that the longer you wait to publish results the more likerly we will be to forget. If PwP make a sacrifice, then sponsors must do likewise. Tell us the truth - and tell it on a timely basis.

YOU are powerful,, but WE are invincible!

Peggy

My name is on it. Thanks.