[caldeerster]

I am not all that familiar with the various groups and foundations - I know there is PAN and MJFF and a few national PD organizations and a group that follows clinical trials.

But is there a purely activist group? One that could organize peaceful demonstrations outside of the FDA and the NIH and the Capitol buildings and bring publicity and a sense of urgency to our fight for newer treatments?

I know we have people and groups that diligently roam the halls of Congress and negotiate quietly with key FDA officials.

But I'm referring to a purely activist group that would stage peaceful and creative protests with the idea of bringing media attention to our cause and applying public pressure to the FDA.

Is there such a group that already exists?

[paula_w]

Cal, i would be concerned about the small size of such a group. it would likely need to include all neuro conditions. The closest we came to the type of activism I think you are talking about was take out a full page ad asking Amgen for GDNF in their hometown newspaper. [we had a generous donation to cover the expense]

I think our orgs should combine and become pharmas. All the experts including US under one roof. Obviously depending on people without parkinson isn't working.

[Conductor71]

Originally Posted by caldeerster

But I'm referring to a purely activist group that would stage peaceful and creative protests with the idea of bringing media attention to our cause and applying public pressure to the FDA.

Is there such a group that already exists?

No there is not one, and I think one is sorely needed! We are far too complacent and quiet. Look at what the FDA is doing to Solvay, for example. Sometimes pharma is on our side. The FDA has shut down many potential new treatments here when they have already been in place for years in Europe, Japan, etc.. It is appalling and I'd say inhumane to do this, and sorry, it is not about safety. Someone has to benefiting somewhere; it's certainly not us.

Not sure if you know of Rose of his Heart here. She is both a gifted writer and all around wonderful person who like me is a YOPD person. For over a year now, we have been toying with the idea of forming an activist group as you say to launch peaceful demonstrations but using performance art to get message across- we even have a name "Freeze". What we don't have is anyone who really wants to get involved; we have recruited other YO people and they tend to fade away; partly I think it is denial and other part is fear of being outed as most of us feel pressured to hide our condition for employment purposes. We have had some creative ideas...acting out skits, including people watching us in freeze tag, and I have thought we could stage regular "freeze ins" at the FDA until they see fit to make some changes.

I know that MJF has our backs, but when I see Sanjay Gupta on CNN, my thoughts are of an entirely different topic. Biomarkers are great, but who is out there speaking for us now? I think we need something similar (maybe not as brash as) ACT UP for HIV/AIDS. They did soooo much for the AIDS community and we could learn a lot from their tactics. If you or anyone else is interested in developing an activist group further, please PM me. Right now I am seriously planning on taking action over the FDA holdup of Duodopa treatment here. I planned mainly on letter writing to key people but would love to do something Michael Moore style where we follow around head of FDA trying to talk with them about how they could ethically hold back a treatment used for over 10 years in Europe by forcing that same treatment through clinical trials here! They supposedly fast tracked it three years ago! I want some answers.

Laura

[Bob Dawson]

You are on the right track. Traditional picketing in front of a building is too common. A small number of people, using street theater or performance art, can attract a lot of attention. There is a great need for a group that does not do research or run a big org. There is a great need for a group of unpredictable creative rabble rousers.
And it will come mostly from Early Onset, young people, because us old folks get tired.

[caldeerster]

Originally Posted by Conductor71

I think we need something similar (maybe not as brash as) ACT UP for HIV/AIDS. They did soooo much for the AIDS community and we could learn a lot from their tactics. If you or anyone else is interested in developing an activist group further, please PM me. Laura

Act Up is one of the main reasons that people with HIV are alive and thriving today. When Reagan wouldn't even mention the word "AIDS" for six long years, Act Up demonstrated at the FDA,l in front of the WHite House, etc and pushed researchers and big pharma to dramatically speed up their anti retroviral programs. Act Up's demonstrations were front page, national news.

We wouldn't need huge numbers to get attention. As Bob notes, the group would need to be creative.

How about: "Freeze Up"?

[Conductor71]

Originally Posted by caldeerster

Act Up is one of the main reasons that people with HIV are alive and thriving today. When Reagan wouldn't even mention the word "AIDS" for six long years, Act Up demonstrated at the FDA,l in front of the WHite House, etc and pushed researchers and big pharma to dramatically speed up their anti retroviral programs. Act Up's demonstrations were front page, national news.

We wouldn't need huge numbers to get attention. As Bob notes, the group would need to be creative.

How about: "Freeze Up"?

Oh, I am so thrilled to hear from a kindred spirit. I do like "Freeze Up" because it gives a nod to the AIDS group. Rose and I are full of creative ideas; and she even wrote a manifesto/mission statement, but we haven't been able to gain much momentum mostly because we wanted more people on board.

As for content and approach, we're thinking random acts of performance art in various locales: and even if we start on YouTube or something... please pm me with ideas! Rose can be hard to track down, but I am going to try and convince her that we need to commit to this. I have heard from a couple people on PLM who want to become more vocal/advocate, but I am not sure what they had in mind.

Thanks!

Laura

[Bob Dawson]

Art wins all the time. Showing people what they did not see. People need narrative, meaning, passion, revelation, appeals to their better self. It has to be more fun to be in the revolution than not. Speak the truth, with compassion and hope.

[Bob Dawson]

26 people freeze at Ikea:
http://www.youtube.com/watch?v=0FS0t8vPn7w

[cochrankat]

Originally Posted by Bob Dawson

Art wins all the time. Showing people what they did not see. People need narrative, meaning, passion, revelation, appeals to their better self. It has to be more fun to be in the revolution than not. Speak the truth, with compassion and hope.

Eloquently put! Persistence, grit, and tolerance for being thought annoying also help,