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is this a possibility?

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Unread 04-13-2012, 06:23 PM   #1
paula_w
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Default is this a possibility?

Organizations waste money and spend it on themselves, their researchers, their always very basic symposiums and webinars. But nothing is coming out of the pipeline with millions and millions of dollars wasted.There is a generation of us who know all that stuff. Let's get into some serious information collecting.

Clearly there must be change. So why not anaylze all pwp who desire to - their entire genome? Between the NIH, google, 23andme, MJFF, kinetics, PDF this could be a good way to spend money instead of on mice, lab rats and fruit flies. Wouldn't all our genes thrown into a database identify much about everyone? wouldn't that be worth 100 million dollars instead of yet another 15 yr study that yields nothing?


in the meantime researchers could work on small molecules and delivery systems. It's time to spend the money on the real target for information.

we've been patient long enough - pun intended.
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"Time is not neutral for those who have pd or for those who will get it."

Last edited by paula_w; 04-13-2012 at 06:59 PM. Reason: spelling corrections
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Unread 04-13-2012, 07:28 PM   #2
pegleg
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Default Careful !

Don't bite the hand that feeds you. lol Let's be fair and say "Some" organizations waste money. There are a few whom I would even call frugal by the moderate number of staff employed and modest salaries they pay their administration. But the way to REALLY find the selfish orgs is to look at how much reserve they are sitting on. Don't leave that huge reserve when we're struggling out here trying to find a cure!

This is not new thinking, and not much we can do about it anyway. (Feeling a bit defeated tonight - sigh)
Peg
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Unread 04-13-2012, 07:53 PM   #3
indigogo
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Default patient patients

Paula - frustrating as it may be, I think the research is proceeding as fast as it can - that at this point, it is not a matter of throwing more money at it (a lot is being thrown), nor a matter of it not being thrown in the right direction. It's just really complicated - something patients have known for a long time. I really believe we are all on the same wavelength right now. It does require even more patience on our part.
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“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
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Unread 04-13-2012, 07:56 PM   #4
paula_w
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Default wasn't meant to bite

they are doing their jobs. but it's not enough for us. we are running out of time. the orgs seem to be designed to educate and inform newcomers. they are also now concentrating on clinical trials., but it took some of them awhile. i'm just suggesting one procedure that could identify everything but costs thousands of dollars per person. i think this money is spent unproductively in other ways. i'm not biting, i'm trying to share ideas. Better bang for their buck.

instead of recruiting, just test genomes. that news would spread like wildfire if it were free or for a donation.

could all of our genes identify types, everyone with a certain characteristic don't get pd. everyone with another mutation always gets it. the information would be endless and the millions would be well spent.

the status quo is not working. they are plodding thru these trials with funding and not sharing the results and getting refunded. yes they would need to spend money on us. and they probably would be able to change the illness. it's on the inside of us. thats' where they need to be. while we are alive.

i get confused about how to deal with orgs. i have wanted them to work with us for years; but i want to produce something that changes the disease. so let's learn how we are the same inside and out. if it's a good idea. i wish some people like debi or robin or even michael would seriously discuss this here. let us know you hear us.

if this bites a hand, that hand doesn't understand. there i finished with a rhyme.


paula
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"Time is not neutral for those who have pd or for those who will get it."

Last edited by paula_w; 04-13-2012 at 08:34 PM.
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Unread 04-13-2012, 09:10 PM   #5
pegleg
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Default I understand your frustration

Paula

You know how I am symptomatically, as I do you. We do have to make some noise or we will be left behind! I have had this stuff 18 years - had experimental brain surgery - talked about clinical trials all over the place, and been told "Five more years to a cure" for at least 15 years!

What worries me is what will happen to research funding if health care is completely overhauled? I'm not talking anything political here. I mean health care cannot possibly go like it has been for the last 4-5 years. NIH has actually been receiving MORE funding for research, but with the economy like it is, the costs are higher and we have to compete.

There - I said it "we have to compete" for the dollars. Tell me if you don't agree. Because money is so tight, the blockbuster drugs and therapies are what gets the button pushed for reward. PD has been on the back burner for 40 years because dopamine replacement works so well. Well, that's a lie! The side effects from long-term therapy is worse than the disease in my opinion! I am so dyskinetic and have so much pain, and anxiety and insomnia. Did I say crazy, too? Well, that's where I am headed. My quality o f life (QOL) will start declining at a major fast speed as I enter the 60's. (shiver!)

We have to professionally make sponsors and big pharma, and researchers know how much we suffer - how they can make mega bucks when the 80 million baby boomers hit the market. Dopamine ala carte won't get it!

Jeez, I am rambling! And my typing is going fast. Talk to me readers! What can we put our heads together and do? Yes, we need trial participants, and Fox and PDF and others are working so well with us and us with them to spread the word. But where will the incentive come for new trials?

Did anybody see the Early Morning CBS News today (Friday the 13th)?

http://www.cbsnews.com/video/watch/?...ag=mncol;lst;1

I hope that link works. It's a British study singing the praises of gene therapy. Watch it and tell me how long will it be before our FDA approves it? Will iti be like Duodopa? Been used in Europe for nearly a decade and it's still not approved in the US!
EEK! Paula, you opened the flooding dike! I'll stop now and you talk to me forumites.
Peg (holdiingn on but fading fast)
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Unread 04-13-2012, 09:26 PM   #6
paula_w
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Default bob

Bandido Bob has been on almost every skype call f0r 3 yrs as we wrote the book, most of it from a nursing home. he repeatly had infections and pd [from lack of movment]killed him and he didn't live to see it published.

that's where we are all headed if we don't do something that gets information straight from the source - real pd not artificial , nor animal.

too off now i'm done,
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Unread 04-14-2012, 04:49 AM   #7
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Paula,
I woke this morning with some of your questions, and a few more. Last night practically the last thing I did before bed was read Bob Dawsons post, and I had this vision of the karma that science is building up with the 88 million mice and the other creatures too, and how we are there, millions of us, and we have been saying come and take a harder look at us, we too are in your laboratory, but is anyone paying attention. It is not that the orgs and the researchers are not working hard, or even that their motivation is wrong. I sometimes feel they are just asking the wrong questions. Or looking through the wrong lens. Or something. Or that science itself is maybe incapable of looking at itself objectively anymore. How much is good science and how much is bad science? This isn't personal, it's not saying one group are not doing things right or pointing a finger. It is asking a real question, one that is appropriate for our times.

I am forever trying to get a grip on the idea of 'de novo' as a paradigm for trials. Yesterday we got news of yet another person diagnosed with PD and moved onto a DRD diagnosis, who has been moved back to a PD diagnosis as their condition worsened! Just from this one event, I have so many questions.
Because I suppose even the very best people do not always seem to know whether what they are seeing IS PD. So who are the people on the trials, how many of them do have PD, what exactly is PD??? And this is not to knock the trials or the people who participate in them.

There is the PD we experience, and the PD the doctors know of, and the PD that researchers can see in our brains, and the PD that pharmas try to treat, the PD that is presented to the public by the orgs.

But are we all even talking about the same thing?

And then there is 23&me that because it is a very different kind of animal, not working on the same basis, it has bypassed the old view of biological science and has come up with all these new connections. From data, just data.

I sometimes feel a bit like a 'reclaim the streets' protester. I want to reclaim my brain, and say regardless of what you think my brain is doing, your picture and mine are very different..... I want them all to stop what they are doing, for a brief time and take a real look at us.

When I feel like this the only single group that I feel are really progressing with finding out what this is about are 23&me, and they are doing that because they are not pre-supposing anything, they are sifting data.

I should really do that spit kit thing.......
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Unread 04-16-2012, 05:26 AM   #8
MalindaK
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Default not a lot of comfort for the Health Care Bill

Quote:
Originally Posted by pegleg View Post
Paula

You know how I am symptomatically, as I do you. We do have to make some noise or we will be left behind! I have had this stuff 18 years - had experimental brain surgery - talked about clinical trials all over the place, and been told "Five more years to a cure" for at least 15 years!

What worries me is what will happen to research funding if health care is completely overhauled? I'm not talking anything political here. I mean health care cannot possibly go like it has been for the last 4-5 years. NIH has actually been receiving MORE funding for research, but with the economy like it is, the costs are higher and we have to compete.

There - I said it "we have to compete" for the dollars. Tell me if you don't agree. Because money is so tight, the blockbuster drugs and therapies are what gets the button pushed for reward. PD has been on the back burner for 40 years because dopamine replacement works so well. Well, that's a lie! The side effects from long-term therapy is worse than the disease in my opinion! I am so dyskinetic and have so much pain, and anxiety and insomnia. Did I say crazy, too? Well, that's where I am headed. My quality o f life (QOL) will start declining at a major fast speed as I enter the 60's. (shiver!)

We have to professionally make sponsors and big pharma, and researchers know how much we suffer - how they can make mega bucks when the 80 million baby boomers hit the market. Dopamine ala carte won't get it!

Jeez, I am rambling! And my typing is going fast. Talk to me readers! What can we put our heads together and do? Yes, we need trial participants, and Fox and PDF and others are working so well with us and us with them to spread the word. But where will the incentive come for new trials?

Did anybody see the Early Morning CBS News today (Friday the 13th)?

http://www.cbsnews.com/video/watch/?...ag=mncol;lst;1

I hope that link works. It's a British study singing the praises of gene therapy. Watch it and tell me how long will it be before our FDA approves it? Will iti be like Duodopa? Been used in Europe for nearly a decade and it's still not approved in the US!
EEK! Paula, you opened the flooding dike! I'll stop now and you talk to me forumites.
Peg (holdiingn on but fading fast)
If the health care act really does go fully though, the ones with mega problems like multiple spine problems (me) or older men they would like to say are too old to be treated for metatasic prostate cancer (my husband before I gave them a piece of my mind and they redecided to treat him) just won't be able to get that kind of care, no matter how much money they have or don't have.

The young healthy and able to go into the work force will have first priority. The kiss second. (hopefully they will be able to go into the workforce at sometime.) The seniors won't be so lucky. The really ill ones come to the US or elsewhere for healthcare.

I have friends in Canada and England and they tell me they are assigned to groups. If you move they assign you to a different group. You wait until they have time to get to you.

I pray I am wrong or that the health care is just better, but I am not holding my breath.

Malinda
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