Originally Posted by Todd

It is exciting to see everyone so fired up, but to be honest, I am concerned of the direction this is headed.

There is much talk about "giving the researchers what they need" and "clinical trials" etc. To me personally, this is what the PPP exists for. We don't need another group overlapping what's already being done.

My initial thought was to get the PD community fired up to start putting extreme pressure on the PD organizations to get their act together and create a unified marketing campaign to bring much needed awareness of our disease to the general population. Like Stand Up To Cancer, like breast cancer awareness, etc. Where is our voice in this?

That is the direction I originally intended and one that I will continue to pursue.

Where you all take this thread will certainly benefit the PD community in the long run, but it's not the mission I suggested or signed on for. I'm all for thinking big and out of the box, but we must learn to walk before we can run.

Fight the good fight.

Originally Posted by Todd

With all due respect, I have read each and every response in this thread (a thread that I initially created remember) and I stand by my original statement and intent. In my personal opinion, the direction is headed the wrong way, and while I commend the effort, it wasn't what I originally proposed with the opening statement in this thread.

I am all for a unified patient advocacy front. But I believe we are trying to put the cart before the horse with the plans and ideas I am reading about. With the involvement of many core Pipeline people, whom I greatly respect, I again say that the direction this has taken is more suitable for a PPP project and not a larger scale effort from our community.

I still strongly believe that the first positive step in the right direction is for us to push the orgs to come together and create a unified public marketing campaign to create much needed exposure for our disease. With increased public awareness comes increased public support, both financially and politically, and that benefits everyone involved.

Once we make our voices heard in the arena of public awareness through a joint effort marketing campaign, the rest will follow. Trying to recreate the wheel is pointless. Look to those that have gone before us and had great success and model our approach accordingly. I've provided examples of this and continue to wonder why our orgs can't do the same.

It's a fight I'll continue to pursue. You want to go a different direction, while it's not what I originally proposed, I hope it turns out to be successful. I mean really, the more sides we can hit them from, the better.

But I only have time, strength, and energy for one grand fight and I'm choosing public awareness, because the overall benefits to everyone in our community are phenomenal, as other organizations before us have already proven.

Fight the good fight.