NeuroTalk Support Groups

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- Parkinson's Disease (https://www.neurotalk.org/parkinson-s-disease/)

- - Todd's Vision (https://www.neurotalk.org/parkinson-s-disease/52495-todds-vision.html)

I have copied Todd's 2 most recent posts here because maybe his vision needs a separate thread.

Quote:

Originally Posted by Todd (Post 348931)

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.

2nd post below

Quote:

Originally Posted by Todd (Post 350486)

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.

I agree with Todd wholeheartedly! I have tried to say the same, in a different way, but fell on deaf ears...or so it seemed to me.

Quote:

Todd said: 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.

But, having said that, knowing that the orgs have attempted joining in the past, I don't see that happening in the future, no matter how loud we all shout for that unity.

Quote:

Originally Posted by Carolyn (Post 351255)

I agree with Todd wholeheartedly! I have tried to say the same, in a different way, but fell on deaf ears...or so it seemed to me.

But, having said that, knowing that the orgs have attempted joining in the past, I don't see that happening in the future, no matter how loud we all shout for that unity.

Oh I don't know about all of that Carolyn. If the people with the disease don't want the current organizations representing them unless they unify into one main organization, that would pretty much put them out of business. It would take all of us to strongly voice our opinion every chance we got.

The people that run the current organizations are just going to have to get down off the high horse and accept the fact they are getting nowhere by themselves. It's high time there is only one Parkinson organization in this country and all of our voices are louder than their one voice.

GregD

unified marketing campaign

Maybe I have misunderstood Carolyn & Greg. I don't think this is about the orgs joining. I think it's about them working together for the greater good - for awareness:

Quote from Todd: 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.

They certainly could work together to create a unified marketing campaign like that amazing cancer ad. And they should

Jean

Quote:

Originally Posted by Carolyn (Post 351255)

what about more of a liason of pwp to the orgs?

( idea: gather the data bases and spread the word. the awareness. give the orgs public service announcements of what you have done and what is in the works.)

Quote:

Originally Posted by Curious (Post 351295)

An independent group as liaison - pwp not tied to or funded by the orgs.

posted by jeanb:

"An independent group as liaison - pwp not tied to or funded by the orgs."

that's the point of the organizing we're doing on the other thread - a unified patient voice to wield influence.

I think that needs to happen before what Todd is asking can happen.

we're talking in circles!

Carey you are right of course.

But the BIG thread had grown & encompassed so many other ideas! And in writing this - referring back to Todd's posts - maybe we're straying from his vision again. Not a bad thing - and as you and Sheryl have written before, there are so many directions to take!

It's energizing and exciting - to see where we will go with all of the ideas.

we need to organize and make some noise, then the orgs will either be with us or under our wheels.........
This whole thread has been talked to death. We can do ALL the things we have discussed here, its a question if we want to!
I want to get organized and get the NIH to fund the research we need to do to find a cure for this damned disease.
This is not rocket science folks!! Let organize and get to work!! Organizing is the FIRST thing we have to do or everything else is a moot point!!

Charlie

is there a misunderstanding?

JeanB posted:

"But the BIG thread had grown & encompassed so many other ideas! And in writing this - referring back to Todd's posts - maybe we're straying from his vision again."

the thread may be big, but the idea we've arrived at is as targeted as a laser: an independent voice for the patient, plain and simple. I guess I should post that on the other thread. All of the stuff that has been posted on the other thread, as far as I am concerned, are only REASONS why we need an independent voice, not projects we are going to pursue. If other want to pursue a scientific database, or Perry wants a voice for PPP, we can link to them in support. But the only thing that is being created is a unified voice.

BINGO: What Charlie said:

"Organizing is the FIRST thing we have to do or everything else is a moot point!!"