Never thought i'd say this but this move by MJFF ****** me off. We've been struggling to discover a way to help these "professionals" who can't get it right and need us at the table. This is like a slap in the face. No patients allowed to join discussions.

paula

http://www.pdonlineresearch.org/

http://michaeljfox.org/newsEvents_mj...cle.cfm?ID=281

And no messy patients about to stain the carpet.

Kind of eery how close this is to what I have been working on for the last year or so. Let's see...

Me: parkinsonsonline.org
MJFF: PD Online

Me: Open to researchers and practitioners of all types with a special emphasis on neuros, endocrinologists, immunologists, and gastros. Patients who show an ability to contribute, too.
MJFF: web community of scientists, industry professionals, grantmakers and financial investors <not a new idea in the bunch I bet>

Me: have built a beta version of a sophisticated and continuously updated knowledgebase of Parkinson's disease on a Wiki frame
MJFF: will work to build a sophisticated and continuously updated knowledgebase of Parkinson's disease <you have to wonder how wide the focus will be now, don't you?>

Me: Launch date could be tomorrow. I'm just trying to get it on a solid footing to impress 'em.
MJFF: launch date spring 2009 <maybe>

Does anyone know if MJF is even alive anymore?

if you go onto the site and attempt to register, it gives categories to check. If you check the box that says you are neither of the above (dr., researcher, etc.) it will tell you that only people in those categories can "participate" in the online discussion but that everyone can read the online material. So I am OK with this, at least being able to read what the scientists have to say, even if I cannot understand it (and that may be a large factor of why they excluded non-scientific people like me, I'd be interrupting all the time to ask questions and the merits of the discussion would get bogged down.)

I'm not offended by this, because personally, I would have nothing to contribute to a scientific discussion...but I do feel they could benefit greatly from the years of white-rat experimentation that has been done by folks here and elsewhere, Ron and Rick come to mind but there are others.

Anything that helps, I'm for, and I am hoping that this will.

We are at the mercy of a profession that has become a racket. I am not accusing MJFF of anything underhanded but I have no trouble accusing the health professionals and industry. There are some who don't want patients at the World Parkinson Congress either.

They just aren't going to get it....not even MJF.


paula
hit smilie face icon accidentally

I tried to edit my earlier post to this three times now and it keeps going back to my original post, and now I see it posted it. UGH!

I wanted to add that MJF is alive, on the cover of People this month. The gist of his interview is that he expects to live another 10 years, and in 10 years, he believes there will be lots better drugs for PD than there are now. Just what we want to hear, I know. Plus, in his 1998 interview he said he believed they would find both a cause AND a cure "in several years". I feel like he is backtracking and despite what appear to be geniune efforts to do things differently, all that is really coming out of all the funding is just more drugs which NOBODY needs or wants.

But yes, he is alive, and actually looks really good, even accounting for makeup, lights, etc. Check out his interview and see what you think.

MJF expects to live another ten years?? What kind of message is that to give the public and other patients? What is he talking about? A terminal disease, or suicide? Huh?

I find this disappointing. I would have thought the MJF foundation would be more patient oriented. I think Lurking has a good point -- there are lots of "white rats" in this forum and I think we have something to contribute.

And I agree with Paula that this is a slap in the face.

Zuchinni - in the article MJFox said he expects to live the next 10 years in about the same state (healthwise). And that after that he expects there to be better treatments.

can i just leave y'all a group hug?

this really does suck.

i'm sorry i haven't been much help lately. i broke my right hand. i'm right handed.

I realized along time ago Mr. Fox -is for Mr. Fox. period.

From the website: The PD Online Research community will work to build a sophisticated and continuously updated knowledgebase of Parkinson's disease, and to actively guide research funding and investment through interaction with funders and financial investors. AND While PDOnline Research is available as a resource to everyone, participation in the online discussion is limited to health care professionals and those professionally involved in the execution or funding of scientific research.

It sounds to me as if this is another way to get the people with money to invest in research together with the research that needs investors. Parkinson's disease research.

I'll just say thanks.