I haven't been on here for quite some time, but have checked threads daily as a "lurker".

A while back I started a thread entitled "What's wrong with the PD community?" that garnered 1000's of hits, tons of responses, and eventually a number of related threads. It was influenced by the "Stand Up To Cancer" campaign that started at the time. I thought, if cancer can do something like this, why can't we? Why are we so disjointed and unconnected as a community? The resulting responses to my thread were exciting to read, but then things grew silent.

While I am well aware that many have come (long) before me and created inspiration for the PD community to advocate for themselves, it was nonetheless disappointing to see things quickly return to the status quo. So I took a break to reevaluate where I personally was and where I wanted to go.

Then this thread popped up. And while it's all over the place in terms of ideas and directions, I find it exciting.

The bottom line for me is, the orgs don't speak for me, nor does MJFF. How could they? When have they ever asked me, or you, how we are, what we feel, what we need, and what we think? (They certainly aren't shy in asking for my "donations" to "my cause" however.)

I think we need to get p*ssed off, angry, frustrated, and motivated to start making some serious noise and let our voices be heard. Maybe it's the apathy and depression that a great deal of us struggle with that slows us down, the nonmotor symptoms we deal with, or just our PD in general, but we need to find the strength and energy to fight for our rights. If not us, then who? Certainly not the orgs that "supposedly" represent us, or MJFF that raises a great deal of funds for "their" mission. We have to find a way to eliminate the fear and embarassment of being a PD patient that seems to stop so many from speaking out.

We have a voice, and very important thoughts that deserve to be heard, so we need to start using it. Now.

Time to fight the good fight...