I'm afraid that we would be lost in the larger picture. The site tries, as the name says, to cover all things. I'm thinking of a site more along the lines of what the others don't cover - medical chicanery, conflict of interest, market manipulation, Amgen, ignorant neuros, etc. Hey, I just thought of a slogan, title, t shirt... "No More Make Nice!" NMMN for short.

The point of a wiki is to make it accessible to all. Even if you created a "limited" wiki, by definition, it could be taken over by the world.

The platform is there now, it exists, it is known in the board rooms of the powerful (FOX, PDF), they are paying attention.

Take advantage of it. What's the problem?

This press release appeared simultaneously with a full-page ad in the hometown paper of both Amgen and its CEO Kevin Shearer in Thousand Oaks, CA. The ad appeared on Sept. 13, 2005, and was framed with photos of about 30 PWP. The press release (much the same words as the ad but without the photos) got a lot of traction in the trade papers and some general daily papers. It wasn't cheap, but when the paper found out it was about Amgen and GDNF they lowered their price for the ad from $10,000 to $2,500. It was an intense effort by the Pipeliners and other committed advocates. It helped keep the conversation alive. Think what we could do with broad patient support and action.

--------------------------------
Parkinson's Patient Advocates Call on Amgen to Move Forward with GDNF Clinical Trials

Sunday's CBS News program "60 Minutes" profiled several courageous Parkinson's patients who volunteered for Amgen, Inc.'s clinical trials of glial cell line-derived neurotrophic factor (GDNF), a promising Parkinson's treatment for which the biotech giant company holds the patent. Today, Tuesday, September 13, 2005, a coalition of grassroots Parkinson's patients and organizations published an open letter to Amgen President and CEO Kevin Sharer in a full-page ad in the Ventura County Star, where Amgen is headquartered, urging him to restart human trials of the growth factor or license it to a company that will.

Clinical trials have shown GDNF may be the first treatment to actually reverse the course of this terrible and presently incurable disease. Yet Amgen abruptly halted its own trials, refusing to allow trial participants or researchers any continued use of GDNF. Without GDNF, patients who had recovered their abilities to walk, garden, drive, eat, read, and work have returned to their wheelchairs and walkers.

"The '60 Minutes' segment casts doubt on Amgen's claims that GDNF is ineffective and unsafe," said the group's spokesperson, Ann Wasson. "And new physical evidence from the autopsy of an earlier trial participant proves that GDNF can regenerate the dopamine-producing cells that Parkinson's patients need, and actually reverse the progress of the disease."

"This is a milestone in Parkinson's research, a legitimate hope grounded in scientific data and observation," stated Ms. Wasson, 48, of Kentucky, diagnosed with Parkinson's at age 37.

"There are more than one million people with Parkinson's across America who are slowly succumbing to this debiltating disease. The next five to ten years will not only see the loss of thousands of Americans to complete immobility and death, but will see even more Americans join the ranks of those suffering from Parkinson's disease without hope," said Paula Wittekind, a patient advocate from Florida, who has established a web-site for neurological advocacy, GrassrootsConnection.com.

Clinical Trial Participant and coalition member Roger Thacker, who was featured in the "60 Minutes" segment, said, "GDNF is a means of hope and help for those who suffer from this cruel disease. It could be the miracle needed to save a generation of patients."

"Time is not a luxury that people with Parkinson's disease can afford," said Rees Jenkins, a North Carolina patient advocate. "Delaying access to promising new treatments can mean the difference between life and death for many patients. Restart human clinical trials on GDNF. Do what is right."

Contact:...

Thank you Greg...As I was reading the many comments in this thread, all I could think of was to post this letter too. Several of us in this thread signed that letter. When the letter was in that newspaper I assumed...niavely I can see now...that there would be some kind of uproar, etc. about the content, but if I recall correctly...so do correct me if I am wrong,Paula and Greg...nothing happened. It was not picked up by any other papers as a point of reference. It was not challenged by Amgen. None of the orgs commented, publicly or privately. Nada! Nothing!

We wrote that letter, sweated and cried over the content...and nothing.
To my knowledge is was virtually ignored by Amgen, just a bunch of ****** off patients who didn't get their cure. How can they understand? How can they indeed!!

I don't post on the board much because I don't feel I have sufficient or credible voice to be heard, but today I am taking that risk and speaking my mind too. I am the silent, rather bright, one in the corner who only comes out when riled and hopes in doing so to not make a fool of myself by stepping into the light. I guess it is the MDD/PTSD person in me that is still in and has been in recovery for far, far too many years. Having said my personal comments in this paragraph, I am NOT looking for sweet and kind reassurances in reply, but just stating fact about me. Overcoming a traumatic past is not easy, it just is.

I few months ago, I watched the Live Strong Cancer Video Campaign on TV...not just on YouTube, where it can be found today...all i could think of was, okay we PWPs need a campaign like that. I think I even asked that question here in NT, and got no replies, or just a couple, but no discussion. I don't see how any more books, although always welcome, can make a big difference. So many are read and then forgotten by the reader. We can write all the articles we want, but they too are soon forgotten.

I am NOT IN ANYWAY putting the Unity Walk down. I have never attended due to cost, but I here the happy comments of those who do and have attended. I do wonder though if Awareness Month, which as with all months of the year shares awareness with several other voices trying to be heard, such as Autism, truly gets people to remember PD and want to know more.

My family thinks the Central Park walk is just cute and sweet. But, then I don't have a family that cares about PD in any way, shape or form. I am waiting, but certainly not holding my breath, to see if my PA family will care enough to join our Gettysburg Walk For Parkinson's in late April 2010.

And PAN was booed, so to speak, on the NPF board a couple of weeks ago, and I did all I could to set the record straight about the Registry, which was at issue. The typical, "I don't want my personal data out there on the NET"...Hello, it is already out there on the Net! I even had a conference with Mary Richards to ensure I had my facts straight before I went back in and attempted to set the record straight about the Registry. But still there is the "PAN does not speak for me" mindset. Heck, just because I am a PAN coordinator, does not mean I agree 100% with the issues they have on the table at any given time. As we all know already, it only takes a small number of voice to get people to believe the negative. This is due to lack of education about what the orgs do...IN FACT...and in this case PAN. Personally, educating the public, and I include the PWPs and caregivers out there too, is paramount. We can't sit back and believe that ll PWPs and caregivers don't also have a misconception of what is going on around them. Every time I speak to a support group about PAN I marvel at the fact that 90% or more, 1) misunderstood, or 2) had no idea there was a PAN.

Parkinson Society Canada (PSC) has this video, but quite frankly I think it would scare anyone who views it who does not know about PD...not educated about PD. To me, it sends a scary message...just my personal opinion.

I know I am not as busy an advocate of PD as I should be, but in January of this year I said that I was "turning over a new leaf" in my role as an advocate. So was, and am doing so, speaking to groups. The one I am MOST excited about is in October when I go to Misericordia University in Dallas PA to speak one or more ancillary medical classrooms of students. Their professor wants them to hear from the "horses mouth" what it means to have PD.

"I teach and specialize in neuroanatomy and brain related disorders. I have begun searching for individuals with Parkinson's to be guest lecturers and come and speak to my students about the disease and their experiences with it. Seeing and hearing someone with a diagnosis makes a far greater impact on my students and makes them far more likely to recognize a disease when they are out practicing."

My hope is that I can make a good enough impression on the students and the professor (and any other classes I speak to that day) that I can garner a letter from him, or something along these lines to get a much firmer foot in the door at Hershey/Penn State, Johns Hopkins Medical and/or Nursing schools to start with. Both are within driving distance from my home.

Heck, I currently work with two LSVT Clinicians who are not educated properly about PD, so their involvement in my support group in Gettysburg has opened their eyes. And it is also obvious to me that they were not taught anything about PD while attending LSVT certification classes, only about LSVT. Having said this, I was impressed in January when one of my LSVT clinicians came to the meeting and showed off the newest MJFF book which was gifted her by her husband at Christmas.

So, I am grateful that I can still type my words and thoughts and that preview and backspace are available, because sadly, I stutter and stammer when I talk all too often...something I hate.

to all. I am stepping down from my soapbox now.

okay, another idea, for next year, WPC, say we took paulas 'book' that she needs help with, chapter topics defined by people here, really looked for the best writers here and elsewhere in the pd world, those who really know their topic or area of specialist knowledge, and got started, posting initially to a wiki but also fishing around for support and sponsorship from the orgs. From initial topics draw out an awareness campaign display for WPC, display boards with text drawn from potential 'book'. This would promote book, wiki, disseminate awareness and involve orgs, medics, pharmas, etc in an engaging way. Nobody would have too much to do, and it would be an open ended project with the prospect of further development. Patient views could be presented in a very non-confrontational way, that nevertheless would have impact. Everything we have proposed here, and in past posts could be looked at, from the alternative thinking in terms of care, exercise, diet and awareness, to the pd experience, to the patients wish for treament that addresses their needs, and the potential value of patient involvement in decision making................. just trying to join th dots........

Lindy

Also...yes, I know I said I was done...We KNOW that the pharma industry is wrought with greed, graft...seeing only the profit margin, etc. etc. I have posted several articles over the past year or so about how much CEO of pharma's make each year

It is no different than the fact that pesticides and toxins cause most of us to have PD. I for one do not expect that chemical industry, or the governments of the world, to do anything about it. There too is graft and profit margins. It would be like the U.S. federal government telling the auto industry that they need to shut down, just as any small business would do, because of bankruptcy. The backbone of the American economy would be crippled beyond repair.

I do not say this to cause a political discussion...just using these two industries to make a statement in fact.

My son in law and I were just talking about this in his kitchen yesterday. He is an English professor at Penn State and has authored several books.

carolyn, you bring up a point that i have been thinking about including here perfectly. i think the full page article did have an effect. but, like so many other things that take place with research, we aren't told about it.

can you imagine what we don't know? People have used our ideas and have heard us. There are so many social factors involved as well. With MJFF, you have celebrity and all that goes with it. With all of the orgs, there is the medical community and pharmas, who views patients as "subjects".

It's ranking by wealth. But what entitles the orgs and scientists to make all the decisions? As rick and girija were discussing, clinical trials never get enough recruitment and seem to just go away. We can't have a treatment if we never know about the trials. Then problems with trials were uncovered.

Knowledge is power. If you don't have money, knowledge is the next best thing. We are being denied knowledge by virtually everyone involved in solving our illness. It's getting better. I think we would understand the financial reasons for certain decisions, if we had all of the information. Being kept in the dark, with little feedback, is quite effective in maintaining control and it fosters guessing and paranoia.

But carolyn, you are right, the ad was ignored by the key players, and the effects were kept from us. But we've gotten enough feedback to know that the effects were indeed felt. Gregw is also correct in saying that during that time period, we did get public support, even from the Lancet.

But..then ...we, too, have our own list to work on. like convincing people that in person we don't always whine....lol [speaking for myself]
paula

"Personally, educating the public, and I include the PWPs and caregivers out there too, is paramount. We can't sit back and believe that ll PWPs and caregivers don't also have a misconception of what is going on around them. Every time I speak to a support group about PAN I marvel at the fact that 90% or more, 1) misunderstood, or 2) had no idea there was a PAN."

This is my experience, too, Carolyn, although support group talks = 1 and JHU talks/being interviewed by doctors number 2 or 3, and I really did make a complete idiot of myself the summer of the GDNF action. (It was mostly due to a slam-dunk drug change that i should have refused.)

As I said in post #26, above, we can do a lot, perhaps enough, by ourselves, and we can teach other PWP with solid information from the best websites and the most factual information here.

We need to become comfortable with talking about nonmotor symptoms and about depressed people getting proper medical attention.

And I believe that we must advocate for ourselves in the examining room and the surgical suite and equip others to gracefully do the same. The voice of the patient must be heard everywhere patients are found, so there is a powerful groundswell.

Jaye

Paula buddy,

You have always been so good about catching me up about what's going on. Not in the last two or so years, since you've had more trouble typing, but before that, I have, due to laziness, much of our correspondence on various computers. Seems like that would provide some material, and I'm willing to edit what's there, like take my stupid comments out of it.

Jaye

P.S. I have an idea for writing and it's too soon to share. I'm also not too pleasant about team writing, but if I have nudged anyone to do so, hooray!

Jaye again

Thank you Jaye, and lindy, i must admit that without a treatment intervention, i am not really capable of writing a book. i do mean it unfortunately, when i say it would take help. As Dennis Hopper says, "we need a plan." i must add that lindy presented a plan, sorry, that's how short my memory is, and one that tries to include others' ideas.

We do have a story. you are very appreciated.

paula