money? heart? ok but it's not a bet; it's not a race. It's about teams.
It's about teamwork. exactly the opposite. but this is America.

paula

It's about teams? exactly the opposite of what? Paula, I don't understand.

fell sleep - typing a response

it's really pretty simple. i understand what we are trying to do is massive, but I don't think it's unified. And i don't think the one with the most money wins. i don't view clinical trials as a contest to see who is in the most. That doesn't mean I don't appreciate people who are in them.

teachers just aren't built like business people. we share, it's not in our nature to keep ideas secret to be the best. i understand that in research one must not let other s steal the idea. i guess it's ok to steal now and the ten commandments are out the window in favor of a bottom line.

bottom is a good word for it and where it should be.

so if clinical trials are going to go commercial [and i'm speculating because i don't know] i think people who have been working on this should not be ignored or have to listen to any org doing it best rhetoric.

it's not about who does it best iMHO; it's who produces the treatment and i wouldn't bet on anyone being more special than another. For ten years i've promoted communication and teamwork. I still am.


paula

The question of participating in clinical trials or medical studies of any type is a hot button issue within my PWP gang. The pharmaceutical industry has committed grave strategic errors, violating the trust and hope of millions of people. The Amgen GDNF fiasco, the secretive and bizarre “global shortage” of sinemet, the multi-billion dollar fines for criminal actions, the multi-billion dollar damage lawsuits for harming people while hiding the truth…. Volunteers who offered up their living bodies and their living brains in the hope of contributing to all mankind have had their trust shattered. Volunteers thus became hard to find.
And yet we know, that without clinical trials, a cure will be delayed.

It starts and ends as a question of trust. I am lucky in that I have a neurologist who is also a scientist and above all he is also a DOCTOR, in the old sense of the world. I tell people, if you want to know what the definition of “doctor” is, it is him. So if he tells me he knows about this experiment, he believes it is a good idea, and he trusts the people involved, I’m good to go. I trust this guy. Before you let someone inject you with unknown substances or let them drill a hole in your head, you have to have trust. Honesty. Humanity. And a fierce determination to eradicate this horrid disease from the face of the earth forever, or at least, until then, alleviate the suffering. Big Pharma has blundered dramatically by violating every law of God, man and nature. Some of their actions have been so wrong-headed, you are left wondering just exactly what they think they are doing.

The damage done has been great.

In my Parkinson’s Posse, it is almost unanimous to say that we will boycott clinical trials involving sham surgery.

It is entirely unanimous that we will boycott Amgen until the day they chisel the names of the 48 volunteers into the exterior wall of their head office.

It is entirely unanimous to be immensely careful of anything said or done by Pharma or bio companies, especially the ones that are constantly being fined for criminal actions; who then add the cost of the fine to the price of the drugs and continue their illegal actions.

So when considering joining a clinical trial, consider that it is the biggest, most dangerous job interview of your life, but it is not them interviewing you, it is you interviewing them.

Who is paying for this study?
Is it a study to add a slight variation to an existing generic drug, so that it can be patented?
If it is a university study, have the doctors involved been receiving kick-backs? Ask the question.
What is the chain of command? Who is lurking at the other end of the pipeline? If it is Pharma, there will be no legal connection between you and Pharma, so they are completely protected, and you are completely vulnerable. What is the track record of the people and organisations involved?
Will this study be peer reviewed and published, or hidden away, as most studies are?
Is this the 100th repetition of the same study, made necessary because scientists refuse to share the results of their research?
What do other groups of researchers think about the competence and integrity of this group?
Is this study aimed at something that would be really beneficial if it worked, or is it just another frivolous study about some obscure detail, to fulfill the “publish or perish” ambitions of a scientist who hopes it will pave the way to tenure at a university, or a highly paid career with Big Pharma?
Will you be given information of what is happening during the process, or are you just a pawn on a chessboard, cheaper than testing it on monkeys because they would have to feed the monkeys?

It is a question of trust; always hard to be sure of.

The Michael J. Fox Foundation is an organisation that I trust. Granted, I wish they would speak out for us when some of these monstrosities are perpetrated by unethical scumbags who are bottom-feeding. But Fox has chosen to direct their energy and money into direct scientific effort, figuring that the crime lords or political wrestling matches will continue anyway, and the only way to get the criminals out of the lives of Parkies is to cure the disease.

So, yes, I would participate in a study chosen by the Fox Foundation. After asking all the above questions, and checking out their references, such as:
http://www.michaeljfox.org/research_...archersSay.cfm
I still wish MJ Fox and Andy Groves would get up on stage with flame-throwers, from time to time. But anyway, as far as research goes, they look good to me compared to a lot of what is going on out there.
Bob Dawson
Sure to take some flak from the Posse for selling out to The Man. Again.
+

Paula - I think you are correct. PD does not have a unified community behind a cure. "Team" is a term used by many of the orgs for their individual efforts, usually to raise funds - and the orgs are in competition with each other for money.

In the case of research, though, if I have to put my money on one horse, it would be MJFF. Not because they have the most money, but because they know how to use that money. Ironically, the thing they do best is team building - something unknown until recently in the scientific world. And, to his great good credit - and all of ours - Michael J Fox has lent his extraordinary celebrity to MJFF, endowing them with the power as the Super Convener - and they know how to use it!

It would be foolish of MJFF to discount and downplay that power, and detrimental to the cause and effort of finding a cure. ALL of the orgs, at this point, are better off putting their noses to the grindstone and forging ahead full charge on our behalf, not worrying too much about what the other guy is doing. The orgs each have their strengths; they should recognize that and promote each other on that basis, join forces when it makes sense, and not put up roadblocks built on ego or tradition or standard practices. We don't have time for them to play nice - we need them to play tough, fair, truthfully, intelligently, innovatively and productively. There's a lot to do; many paths to take; each can have their part; we're lucky to have so many people working hard on our behalf - just so they don't get in each others way.

Like you, Paula, I am a lover of process and inclusion. The great conundrum is that MJFF gets the highest points for both process and inclusion, while at the same time they are also the most exclusive. They have the good luck to be the new kid on the block, so their ways would, almost by definition, be seen as fresh and innovative (or the bad luck to appear as bullying rule-breakers?). I believe the new guys have the moxie and bring a game that will ultimately prove successful just because their innovation is based on inclusion and collaboration (in their exclusive, celebrity way), and is not based on dumping huge amounts of money without direction or squandering MJF's time and health.

I wish everyone with Parkinson's had the chance to be a fly on the wall of a MJFF Scientific Advisory Board meeting. It was inspiring and comforting. I know that they are doing their best, and that their best is extraordinary. I guess I should write some more about it, but so far the words have failed me.

Well carey, you are doing a good job so far with words. People think differently, with no feedback they don't know where to put their confidence. I'm glad you did attend the meeting; that's what we have wanted all along. Please keep the information flowing when it's available.

paula

Paula - words are the only things we have right now. I'm hoping for some real data soon!

Carey - I agree with you- both about MJFF, AND about the other orgs focusing on what they do best.

And Paula, I agree that clinical trial participation is not a contest. It is a very serious business. I know pwp who work hard for clinical trials awareness: some have never participated in a clinical trial, and some have. I respect all their hard work and points of view.