Originally Posted by Conductor71

Harley,

I asked myself this question of the orgs early on when I searched their websites in vain for any iota of information on becoming more involved in seeing change. I think the only ones that really even have the patient in mind anymore is the PDF (Pipeline is way beyond compare). This is an area I think we would need to protest in and of itself. I don't want an alliance with them at this point. I think it says more at this point to go our own way and tell others just why we are doing so.

You're insight into the stereotypcial PD patient oriented conference or convention is so spot on. The idea of starting our own advocacy oriented conference is simply brilliant! I could envision Rick heading workshops on how to take control of this as best we can beyond meds; Nan and Dr. Jay setting up forced pace cycling demos; Rose and I will have our Artivism in the midst of it all; Girija and Ron heading workshops on leading theories on PD (ours included), for starters.; alternative/complementary therapies with Fiona and Maxx...I know we have discussed here how newbie need patient mentors; we could even set that up.

So many possibilities...

As for funding, I will check with Rose on that as she has experience with non-profits. I don't really want to form yet another generic PD non-profit, so I could see our Artivist role at first to raise awareness and money just for patient advocacy in form of annual workshops. In fact, given that we have such a clear cut goal, I think it might be easier to raise funds for such an endeavor; contributors can see the reward in short order or in person our conferences. It would also be fantastic if we could see similar patient centered conferences held Canada and Europe...Bob and Lindy seem like natural people to extend this internationally.

Just think how great it would feel to have patient centered conference around the same time as the AAN holds there annual meeting; this clearly sends the message that it's not okay to ignore us. Please don't edit yourself; Harley, the money will come somehow. Keep on with the ideas!!

Laura