http://www.aurorasentinel.com/lifesc...cc4c002e0.html

http://parkersclimb.com/112-days-to-...0%99s-disease/

thanks to MJFF

Quotes from first article...

Federal funding for research is tight against the backdrop of an uncertain economy and the money being spent on wars, Freed said.

Federal funding for nine out of every 10 National Institutes of Health grants are denied, Freed says.

“At a time when research could be booming, it has been deliberately cut by poor funding from the federal government,” he said.

Does this make anyone else here really angry? Think of all the money spent on war in the last 10 years (whether you believe the wars were necessary or not). Money that could have been used to fund research like the article mentions. I mean the effects of phenylbutyrate were discovered in 2003 and there's still not been a double-blind study on it 8 years later? Infuriating!

hi,

we are beyond angry and trying to change it by getting patients in on the research decision making and changing aspects of clinical trials. currently,we are being led by people without pd. that's good for energy but they don't know how it feels. patients are now globally linked for advocacy.

Why is it often the case that these drugs are tested only on those in the earliest stages of the disease? Since we do not know how rapidly the disease will progress in an individual until that progression is followed for a year or two, what are the researchers comparing (in the earliest stage of PD) the rate of progression to? Also, if they want to see if it can reverse PD, they need participants who have some real, measurable progression. You cannot see is someone is getting better if they are almost normal already. The drug is already on the market, so why not test it on people in various stages?

Ann

Ann

As an advanced patient [balance and arthritis render me useless when off] , i agree with you completely. Perhaps [especially in cases of gene therapy and other brain surgeries] they know they will get better results with less advanced, thus allowing them to go forward and get approved.

IMHO that's a flaw - unfair and should be illegal. There are legitimate reasons to eliminate people from trials, but advanced patients obviously are more in need of relief and scientists who discriminate solely on what stage a person is in is hard to accept.

I've also read that many researchers prefer newbies because they don't have to worry about drug interaction as much as with someone who is on the various PD med cocktails already. I get that, but also agree with Paula, that it's probably more because they know it's much more likely to look positive (and increase stock prices of the company making the drug) if it's only tested on newbies.

It's easier to get an improvement for a smaller problem. When Pd gets complex it is harder to make a visible measurable difference. Or a profit.......