Many of you on this thread...Paula, Greg, AJ, etc....know that a single entitiy org is NOT going to happen. They tried to come to an agreement yearts ago...partly at the request of PWPs to join together...and each would not let go of their "personal" agenda/mission. They also could not find a joint name for the new single entity org.

So, this becomes a mute point.

At the very very bottom of Page 2, I said, "Jean said, 'Many of us responding to this thread have had an occasional seat at the table. Some have attended meetings. Some are part of patient advisory boards.' But is that attendance honestly heard or is the attendance for show; e.g. to make the org look like they care about the PWP voice? (And I don't include PAN in this problem.) Are the views and words spoken by the attendee taken seriously. A couple of years ago, one of those attendee indicated in Jean statement said to me , 'I wonder sometimes if there is a board meeting before the board meeting I attend.' These words have haunted me and stayed with me every since. They were made by someone who has been involved is mega ways in our PD community."

For anyone who does sit on a Board or other org table, how is this working for YOU and all of us?

If the org don't take those voices which they have choosen to add at this moment in time to their tables, how will they take to a grassroots org? Will they take it seriously?

Then there is a bigger problem...

Starting a new grassroots organization will have the same healthy/sick problem. Even Jackie/jakiech saw this when stating: "I don't think there can ever be a PD org comprised solely of Parkies (sorry if that term offends anyone) and care partners. Our lives are simply too chaotic for us to do it alone, and let's face it -- this is a progressive disease."

The Parkinson Pipeline Project already (as a Core Member, I can speak on this topic) has the problem of who will continue on. The membership gets sicker and sicker as each year passes (eight/nine years now) and to date no one has come along to take over the reigns when the time comes that the project needs to be handed over to someone healthier.

Carey said, and I agree, "At some point aren't 'they' counting on our lack of energy to remain divided and mute?" Let us NOT allow "them" to cause us to yoller "Uncle." Our backs may be to the wall, but we do have a voice.