With all respect, I don't feel the AAN is to blame here. While I certainly think that the whole medical community sorely needs an overhaul when it comes to research design, clinical practice, and patient involvement; I don't think we can expect much more right now. The entire medical profession is centered on standards and scientific validity. They can't think or act independently of the world they've boxed themselves into. For the AAN to recruit directly for PWP to serve on a committee is heretical - really, if we think about it, this flies in the face of all they know- how could they possibly circumvent the "system" to recruit directly for patient input? This would negate the idea of control that dominates the profession. When a group can't outright address problematic, outmoded research design (what happens to validity when you can't even agree on a diagnosis most of the time?), or question the lack of progress in clinical diagnoses and practice... hence, their feeble call for "measures". (pardon the sarcasm)

In a community defined by acronyms like the AAN, we get at the committee table more acronyms (PDF, PF, APDA). Problem is that these orgs were selected to represent us as real people; individuals. I'm left wondering; given that it doesn't seem any of us were contacted to contribute, just how patient input was gathered and shared? I checked the websites of these groups and each has a notice on their home pages about the AAN invitation. PAN, while mainly a legal group, shared the info with me via their October e-mail update, although clearly we've had a month to do this. This isn't their domain, yet they were the only direct notice I received.

I will definitely ask the AAN why they do not directly include us, but I think it's because they largely rely on a group of splintered PD "patient" groups- they would have no idea where to find us except through those pathways. Largely, the blame lies with these groups because they have made no connections here or with other PD peeps- could they not create a survey to share with those of us registered with them? Why do they not have a patient rep here on the forum? Why was no contact made with 23 and Me - they are working with patients to collect data? We might say too, that the blame lies a bit with us. The AAN really is making a step toward bridging the divide, but until we have a patient advocacy group; a cohesive voice, that is founded by us and for us, we'll continue to be overlooked. Many of us with PD lose our voice, it's softened, or difficult to follow; this is one way to get it back.

Laura