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#MillionsMissing - Round 2 - Sept 27th 2016

A.B.

Senior Member
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May I suggest a protest goal?

More research funding is just one of the ingredients for success.

We also need leaders to engage with the problems that exist in this area. I'm not yet sure how to formulate this exactly (please offer suggestions) but in general I think it's a good idea to send out the message that the patient community desperately needs more researchers, politicians, journalists and doctors to engage with the problem at their own level. They can all make valuable contributions.

PS: but avoid saying things that might make people at NIH feel unwelcome. They've shown some leadership and should feel good about it.
 

JaimeS

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May I suggest a protest goal?

More research funding is just one of the ingredients for success.

We also need leaders to engage with the problems that exist in this area. I'm not yet sure how to formulate this exactly (please offer suggestions) but in general I think it's a good idea to send out the message that the patient community desperately needs more researchers, politicians, journalists and doctors to engage with the problem at their own level. They can all make valuable contributions.
Last time, the four protest demands were:

  • More funding
  • Clinical trials
  • Accurate medical education
  • A serious HHS commitment to leadership and oversight

Each of these went into greater detail in the protest demands document, rather than being a stand-alone statement.

I understand where you're coming from, @A.B. in terms of we need more physician allies, political allies, etc. While that can be a focus, it can't be a demand, because a demand has to be something that the organization to which we are directing our protest has the power to give us.

That doesn't mean it can't be a goal, though. As part of the protest last time, we met with members of congress and congressional staffers. I know that the London and Melbourne made some progress in that direction as well, and Canada's whole protest was centered around connecting with politicians.

One of the dangers inherent on placing sole focus on funding: yet more CBT and GET trials funded. :eek:

-J
 

JaimeS

Senior Member
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I hope one happens in NY this time.
Me, too! Last time we kept getting close 'behind the scenes' as in, there were people interested but nobody was well enough to 'take point'.

I know it's hard to rely on others if we don't know them well, but I'm hoping that if cases like this happen again, two to four people can step up together, and engage in PMing to settle who looks after what. I know it can seem like a lot of pressure for one individual. The main role of the city coordinator is to do just that: coordinate to ensure that everyone is working towards one goal, not to accomplish everything on his or her own.

The important thing to keep in mind is to get a group of people to whom you can delegate tasks. Attending the calls will allow you to ask questions of people who've done it before. The level of experience on some of the calls is really inspiring.

You could also divide tasks into three roles: 'internal communication' role (between protestors and #MillionsMissing), an 'external communication' role (press person, alerting local press, getting a permit as necessary), and an 'artist / design' role (printing out materials, making signs, getting people to photograph or video, maybe making something dramatic and eye-catching / coordinating the 'appearance' or 'drama' of the protest itself.)

We have heard many times that dramatic performances, visually-impressive displays, and startling actions get far more attention than people standing around with signs...

So, that's an easy way for THREE point people to make a sort of committee for a citywide protest, and coordinate it together.

All just suggestions, of course, in no way 'officially' from #MEAction.

-J