Paula - I agree a new org is the last thing we need. But we do need a way to capture the power and independence of the patient voice.

It shouldn't cost a lot of money; we can do it on the internet. We should not take any money from the orgs or wait or beg for their help; it needs to be independent.

We should look at what the orgs do in total: the good and the bad. Maybe put together a report on what each org does; the overlap; the original stuff.

These organizations are there to serve Parkinson's. The patient is not always put first. The orgs are first beholden to their boards and to their funders; the patients come next. This does not mean that the orgs are bad; this is just the reality of organizations. If the boards are not happy, if they can't get funding, there will be no more organization.

The easiest thing to raise money for is research. With so many foundations courting money, it seems that the pool of cash must be splintered. Wouldn't it be better to have it all in one place? More coordinated; more collaborative?

And there needs to be more attention paid to the quality of life of those living today with PD. More emphasis on better care.

The orgs are doing a lot of good things for patients. But at what point does the presence of so many begin to stand in the way of real progress being made?

We need an unfiltered, independent platform for patients; the organizations shouldn't be afraid to hear what we have to say. The status quo is comfortable; they do not want to rock their collective boat!