This is a google command. Judging from the context, i guess an accelerator is anything that speeds up the search process or the transfer of information that you want to go out. tag words and html used to the tools i used as "accelerators." if i am wrong , please correct.

This post is revisiting the orgs. It was probably about a year ago that Todd started the infamous thread about the orgs and we tried to organize to develop a database. patients need help when they are advanced, but let's look at where we are a year later.

there has definitely been progress made with MJFF. i would like to think that debi, and others, are really getting to know the illness, thru us. The fuss started over this pdonlineresearch being announced as coming and that patients could read it but not participate. That poor first guy who came in. But the forum has always been a tough place in it's own way.

Then we were surveyed, and i' m not sure if it was used, no results announced that i know of. so here we are ..with it online. i tried to register, thinking i needed to. now i see we are permanent guests, which i resisted at first, but revisited. It is enough for now, i think watching and asking questions is good. And appreciate the efforts.

But i am very disappointed at the prevailing attitude by researchers that patients cannot be at the MJFF therapeutics conference. A group of us, who have been here for 10 years and are very knowledgeable and advancing, should be there. The reasons, in my opinion override the researchers assertions that patients interrupt with questions and slow the conference down. If that is true, the wrong patients are in attendance.

we let our posts out in here dripping with paranoia and emotion because this is a forum set up for those emotions and providing support for them. But we still clean up real good and know how to be professional. And we have a need to know the very latest, hot off the press, or get a DBS.

The orgs have yet to recognize a patient group, no, PLM is not a patient group - it's a business and things are getting very interesting as they set up a "new kind of research." But they are not a patient group, patient advocates don't get to speak for themselves quite often, most of the time, as portrayed in a meaningrful analogy by jackie christianson. The pipeline projecct has been recognized by two orgs and heavily supported by PDF, but it has never been given the credit for how much advocacy it has done, because we all have advanced pd and are not easy to work with.

Yet, i ask you, what other patient advocacy group has met weekly for phone conferences for 7 years and still has active founding members. Most of us don't blow our own horns. We support others with our work. i shared everything with this forum.

We are qualified and should be viewed as visual models, with everything going physically with pd and mentally with meds. We are who you are meeting about talking about- trying to help? we know what trials are going on, what is preclinical, we know the pipeline. we know the insincerity level in a person's forecast. by the way did mike fox know dr. oz was going to say that about skin cells? that was awkward and he predicted under ten years. not a given at all .
i'm posting before i lose it and will continue.

paula