I am reading this thread with great interest.

I believe this forum is just going through one of its inevitable lags. Always happens; always will.

NeuroTalk is invaluable for those of us who read and post here. It appeals to many, but not everyone. It is not a chat room, but it is a community. For more than 7 years (including the original BrainTalk) it has been my home.

I have been given the incredible opportunity to represent PD patients on two national org patient advisory boards recently (PDF & MJFF). Both are concerned and genuinely care about patients and their online activities. They would like to capture a portion of that audience on their own websites, for two reasons: 1) they care about patients and want to help, and 2) they care about the viability of their organizations.

They still do not understand the meaning of “community.” They do not understand the need for patient-to-patient communication and education. They are scared of any thing, any entity, that is not under their control or imprimatur. They don’t like un-moderated discussions of “alternative” anything. They don’t understand or like anything they can’t “fix," replicate, or contain on an excel spreadsheet.

I understand this; it is ok to me – they, by their very existence and meaning as organizations, are beholden to boards of directors and funders. They are engaged in important efforts on our behalf. They need to continue their business.

But they can’t be everything. Some things, synergies, ideas, have to be created off-site and by those who are most intimately involved. Us, we, the patients and carers. If the orgs want to know about us, then they can read it here.

It may be in a cyclical lull, but NeuroTalk provides an important platform for informed voices of anyone interested in learning more about living with PD. It cannot and should not be duplicated any where else. It is vital and alive, even when hibernating or dormant.

I love this place and everyone here.