ok, a quick lesson on scientific methodology and research, and please feel free to pass, ignore, correct, or add if you like:

lets say you are on the faculty of a major university, a lecturer as well as a scientist working on a cure for ALS. Your buddies have already figured out the basic scientific property of some of the molecules and how they combine, reproduce, and what kills them off.. They use computer models/other technology, like MRI to study cells and this type of research is known as "basic research" and they are generally required to fund their labs through two means: applications to government monies, usually NIH (national institutes of health), and NIMH. there are other government bodies, but you get my gist.

Then there is translational research, and this is more applied to your specific disease, in this case, ALS. There are both government agencies as well as private (like mjfox foundation). This is the kind of research that generates the most excitement, because there ia more publicity attached. There is also more money available, depending...

in years past, when Congress couldnt get together to pass ANY darn bill. basic scientists if lucky, and really good at writing grants (ive heard the average success rate of obtaining one is ~ 25%) could get the initial study funded, but to keep their labs running, would need to write the grant so that it would be funded ("funding drives research') or continued. If they lost funding, all their work including the students running many of the labs would ALL be lost. Im not sure how many labs and studies were shut down because of this, but Congress is loathe to work together to put monies into research in this country. i wont politicize this, although its difficult not to..the Bush years were especially bleak.
C

@A MyParkinsonsTeam Member. I have a "big bone to pick" with the Parkinson's Foundation and their so called research. They collect a ton of money from donors all over the world. So when I heard about their research (very significant research) not being capable of giving us answers to treatments for Parkinson's, I was disappointed. Recently they did clinical trials on a drug called Tasigna. This drug has been FDA approved for Leukemia. But it has been studied for results for treating PD. The study found it helped treat PD dramatically. But..............because the study group was not large enough, researchers felt like they could not release the drug for the treatment of PD until more studies were done. So why the hell did they perform the research for something so significant and not have enough participants in the study to conclude with headline breakthroughs? This kind of thing happens very often. What a waste. Sterling

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A MyParki...

in fact, Sterling1, there are many public and private groups all scrabbling for the same coin, which is MY biggest complaint. As of the last PAN meeting this past fall, PAN and MJFF joined forces which is a HUGE move forward. The APDA, different from the PDF, is where the docs point new patients first. it is the largest of the dinosaurs, but has links to YOPD groups. the APDA took down my story re: my struggles with Dopamine Agonists, and replaced it with an MD's account of how dopamine agonists have only 10% reported negative side effects such as becoming obsessive compulsive about spending, gambling, and sex.
So I am suspicious of who is lining APDAs pockets..and i can tell you, its not just my paranoid delusions that are creating this (I am not in general, a conspiracy theorist..there was only 1 shooter and he wasnt on the grassy knoll...;/

let me consult my notes and get back to you on Tasigne, made by Novartis...

There is no correct answer to your question about how many people have pd. All the answers are corrulated via other research studies and statistics and the amount of new cases.
NO-ONE REALLY KNOWS ! PAN in the USA has been going to the capital hill each year trying to get money for a registry to count people vis the health Insurances etc.. No country in the world has correct figures for ANY DISEASE.
It costs billions to create one new drug and to get it from clinical trial to shelf takes for ever.

so in order to prove the drug is good for other diseases besides ALS, the research must show that even weighing in the placebo effect, a large enough group must show improvement. you dont want to risk your health by taking something that might improve your balance but makes you plan a suicide. and even then, drugs have side effects. Drug companies have deep pockets to pay off people who try to blame the med for, say,the loss of their spouse. if they settle out of court, the records are sealed and noone need know.

Well thats it in a nutshell. i hope i got it mostly right. So @A MyParkinsonsTeam Member, does this answer your question? the drug you mentioned had just completed its safety trial. if you want to be one of the first pwpd to try it, contact the study folks. (Phone number can only be seen by the question and answer creators) Helen Howard, Georgetown movement disorders program.

now if you dont get sleepy after reading all the above, try melatonin :))

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A MyParki...