Todd, I keep saying I'm no good at politics, but if you think your explanation above was perfectly obvious from the start, and we should have understood, you are mistaken. The people in my family were professionals or service sector workers or farmers. Not a businessman or woman in the bunch. No politicians, either. My own careers were all out-of-the spotlight, working for think tanks and hospitals and other services. I read the paper for years, but didn't have the framework to understand the business side.

But you have just taught me more about marketing than I have ever heard in my life.

Really.

Thank you.

Rant on.

Jaye

Well said, Todd.

I posted the links to SU2C in the hopes that it would stimulate ideas! We can debate "til the cows come home." Or we can get this vision moving in the right direction.

If the orgs are not able to fund a campaign of any kind, then there are ways to find those funds. But it is the job of the orgs to support the PD community and our unified voices/pleas to them should be heard and acted upon.

I think I said this in the initial thread: Another way to advance awareness...those paper things that can be bought for a $1 at the grocery and gas station and get hung in the window. I see them for breast cancer, children's charities...why not PD. I have grown weary of seeing pink everywhere...I want to see tulips and silver ribbons (or whatever color) everywhere one day.

Don't get me wrong about cancer...the past four female generations of family has all lost the breast cancer battle...both my matrernal aunts, my mother's mother, etc. We have only two survivors (my mother and one sister) and that is only due to the advances in breast cancer over the past few decades.

Paula, I agree with Todd...if it takes a "movie star" to draw attention...go for it! Our community already has THREE highly visible celebrities...Muhammad Ali, Michael J Fox, David Phinney...then there is Team Fox too.

For fear of getting flamed, I Pm'ed this to Todd and wasn't going to post it.

But I have done advertising for year. For businesses I worked for and for our own. I have worked closely with many large agancies.

PD is what advertisers would call a hard sell.

It's not a "sexy" or "sympathectic" disease.

It won't be as easy make a pretty commercial or print ad. Place a beautiful bald woman or a sick child.

The gereral public, unfortunatly shys away. Do you see muscular dystophy or cerebral palsy commercials daily, ones for the epilesy foundation? No, you get a telethon once a year.

If it takes getting actors or celebrities involved, then so be it.

That's my humble opinion. The monkey will go back to the jungle now.
*added, but this is something that CAN be changed with awareness and education. PD is not catchy. You wan't get it by talking to someone, hugging or shairng a meal.

I will venture into these waters only because I had an idea that hadn't occurred to me before, which may just mean I am slow. Mounting a national public awareness campaign is not an easy task--for anyone. It is hard work. I imagine (I have no direct experience except that my father was in Public Relations) it takes a lot of organization, connections with people, detailed work, deadlines, and money.

Now I have two ideas: why not put together a public awareness campaign--a business plan--to present to the orgs.? Something they can get behind and fund. Then hire some freelancers (PwP?) and execute it. I personally would appreciate seeing this campaign in the hands of PwP, funded/endorsed by one or more orgs.

My second idea came to me when I mentioned my father. He has told me--and I believe I have heard this elsewhere--that PR/Advertising firms all (at least the big ones) do a certain amount of pro bono work. You could look into that and get something that way to present to the orgs.

I would think that with this approach you'd catch more flies.

AJ

(You might also want to talk with the people who put together the campaigns you admire to see how they came about.)

Todd - we're all putting our reputations on the line. I'll see your reputation, and raise you one more challenge to the organizations:

Dear PAN, PDF, NPF, MJFF, APDA, PA, and PI: If you are reading this, I hope you are taking it to heart! Whenever the topic of a more unified front is raised with any one of you, we always are told the same thing: "The org executive directors meet on the phone once a month." What is the result of those meetings? Why can't you see beyond your own parochial interests for the greater good? Why can't you unite for an awareness campaign? Why can't you pool your research resources?

If your answer is that the way things are now is good for PD patients, I would like to hear how and why you think so. If your answer is, "it could be better," then I'd like to know what you plan to do about it.

The patient interest and passion is incredibly high about this topic as you can see by the excitement these threads have caused. We view the fractured PD establishment as a detriment to our interests. And this is too bad, because it is beginning to overshadow all the good that you do - which is a lot, and of a high quality. I am extraordinarily grateful to have been invited to sit at some of your tables, and hope I am not jeopardizing my chance to remain. (Although the fact that patients feel that we are risking our reputations by speaking out should give you pause - is that how we should feel?)

But some things are not getting done; they slip between the cracks created by so many orgs doing the same thing and not collaborating or coordinating.

To paraphrase Bill Clinton in his 1993 inaugural address: "There's nothing wrong with the PD community that can't be fixed by what's right with the PD community."

And to quote Katie Hood quoting Jack Kemp at the 2008 Unity Walk, “All great achievements in our nation’s progress toward social, legal and economic justice have been led by a combination of agitation and idealism.”

We are agitating for something that seems like only an idealistic dream: that the PD orgs might unite for a greater fight against this disease and for those of us who suffer.

We feel powerless, out of the loop, and misunderstood. Please listen to us - you literally hold our lives and well being in your hands.

I don't want to sound "icky" (sorry, the word I want escapes me) but, Todd, have you already brought a concept to the orgs and been turned down? Or sounded them out? Maybe some one or more of them are willing to work with you on this...