Originally Posted by indigogo

[I] p.s. Sheryl - I promise to use the machete only after taking amantadine!

Originally Posted by paula_w

What is "pushing" the orgs to work together going to do? I'm trying to understand what it is that the orgs are supposed to work together on, and how it will change our condition. Is it for fundraising? Awareness is a big term. Specifically, how would the orgs be approached? What would motivate them to work together. For example, PAN is legislative and their by laws only allow specific action. PDF is a combination of research, education, awareness, more general -overall support and they do support PPP. MJFF has a business approach and so on.

The reason for our frustration is not about what the orgs are set up to do. For all the money being spent, we have no treatment results. This isn't all the orgs fault, but in any endeavor, if you don't get results, you change something. A national research agenda has been mentioned. The orgs do collaborate on PDTrials.org

I no longer have time to try to help the orgs. I need to help myself. And I truly believe that patients can help themselves.

So if you are going to have a Todd's vision project - go ahead. It needs some definition, and should not be detracting from the database project. THere is room for both, but I think they need to be kept separate, or readers are just going to get exasperated and give up on us accomplishing anything.

Stand up for cancer is just movie stars. I don't see the substance, but if it brings in money then OK..go for it.

paula

Originally Posted by Todd

Oh, and by the way, if the orgs are following this thread, and the ones before it, and think "there's disagreement in the ranks...this won't amount to anything" just keep thinking that. Works to our advantage.

I believe that even though we, as people who've participated in this topic from day one, or those that have just read and not commented, may disagree from time to time, we still appreciate and respect each other's opinions and understand that we all want the best for everyone with, and affected by, this thing called PD.

Hang in there. We can do this...

Fight the good fight.

Originally Posted by Todd

Paula, I'm seriously disappointed in your post. Let me try to clarify the "vision" as it's been called.

Campaigns like Stand Up To Cancer that have taken place in the past, such as breast cancer awareness, AIDS, etc., have been very effective in getting their message out and creating general public awareness, something the PD community sorely, sorely lacks.

The latest example, Stand Up To Cancer, is doing everything right and everything our orgs should be doing. Go deeper into their focus and intent, the joint collaboration between cancer orgs and cancer researchers, and their mission is very clear. They simply understand that they're more powerful working together as opposed to competing with one another.

Just movie stars? Absolutely yes! It all makes perfect sense!

Movie stars = massive publicity = massive public awareness (people like to be associated with anything "stars" are associated with - just look at MJF in "our world") = equals much $$$ donated = more money for research = more opportunities for cures or better quality of life for patients = major benefits for those of us living with, and those affected by, PD.

I don't expect the PD orgs to merge and become one. That is an undertaking far beyond our scope and power. But it makes no sense to me that they can't come together enough to create a national awareness campaign that benefits all involved. Their excuse that "we focus on this or that, and that other organization focuses on something else" is complete and utter bullsh*t. It's an excuse, and a lame one at that.

There is no justifiable reason why the orgs can't commit to a joint national, powerful, public awareness campaign. The time and energy they spend coming up with excuses and reasons why "they can't" would be much better spent trying to find ways "they can".

I WANT THIS PART TO BE VERY, VERY CLEAR. I'm not against the orgs and what they are currently doing, or what they have accomplished thus far. I PERSONALLY HAVE NOTHING AGAINST ANY OF THEM INDIVIDUALLY AND AM GRATEFUL FOR THE WORK THAT"S BEEN DONE, AND THE OPPORTUNITIES I'VE HAD TO BE INVOLVED WITH MANY OF THEM.

But I AM questioning why they can't put aside their petty differences and see the bigger picture here. Again, Stand Up To Cancer is just the latest of many examples they can look to for guidance. They don't have to recreate the wheel, just combine resources. The benefits to all are enormous.

If you can't find the substance in this, then my heart goes out to you.

I have the privilege of having a successful speaking business. I get the opportunity to travel around the US and talk about PD, overcoming adversity, and living life to the fullest. Yet I am appalled by how many people within the PD community are painfully unaware of so many facets of our plight. Which clearly means the general public knows even less. Public awareness. Public awareness. Public awareness!

So how do we do this? We unite as one and put pressure on the orgs in a variety of ways (I have a very long list of how) until they pull their collective heads out of the sand (or a certain part of their anatomy) and create a much needed campaign to create awareness that benefits us all. We recruit people with PD, people affected by PD, family, friends, neighbors, business associates, the general public, strangers...anyone and everyone...and we let our voices be heard.

It's really not that complicated. A simple email database is where we start, followed by heavy (and consistent and relentless) email, phone, fax, and letter campaigns to the orgs and media outlets with our demand for unity for the benefit of all. And we keep slamming them until they understand how serious we are.

There are a ton of great causes in our community who are doing incredible, thankless work, and I personally appreciate them all. I'm just saying that we can do more, that we HAVE to do more. I hate to beat this into the ground, but Stand Up To Cancer is just the latest example of what can happen when people decide to come together for a good cause and for the common good, putting individual differences aside. Why can't we?

I am putting a lot on the line, both personally and professionally, by speaking out like this. I'm okay with that. Believe me, my voice will only get louder. I intend to fight with everything I've got, and when they knock me down, I'll get back up and keep swinging until I can't swing anymore.

Just tell me I can't do it. I love when people say that, because it just fires me up even more.

I intend to go out the same way I came into this world...kicking and screaming.

Fight the good fight.