quote from Carey:
"... Due to the very nature of any non-profit organization, the organization is beholden to their board and donors first, their client base second.

A truly independent patient voice will always be at odds with any one and/or all of the Parkinson's organizations."


Thanks, Carey

You have articulated the problem of being funded by a PD prg. When a patient group accepts funding from a PD organization, they naturally are beholden and accountable to the org. And in order to continue to receive funding, they need to keep on being accountable to the org that pays their way.

There is nothing inherently bad about that – it’s just the way things operate.

But that is why this patient-driven initiative (in whatever form it turns out to be) must remain independent and accountable to the patient voice only.