That's what they make you believe. Read this article:

http://www.ncbi.nlm.nih.gov/pubmed/20206941

And this is how the therapy should work:

http://clinicaltrials.gov/ct2/show/s...k=1&sect=X0125)

So twice a day a subcutaneous injection. They say this is practical impossible. Well, newsflash:

http://www.diabetes.co.uk/insulin/di...g-insulin.html

Apparently for people with diabetes it is possible. And then people flame at me when I get upset ...

So apparently you have all the answers to Parkinson's, and know what it is that will stop it. Congratulations! You've done, based on some promising but small trials, in a few forum posts what researchers have spent their entire career pursuing.

I just don't understand the anger at this one organization for not supporting the research you feel is the most promising and that you, personally, want supported. MJFF isn't put on this earth to pursue each individual's personal research objectives, are they? How odd it would be if their responsibility was to answer each individual's personal beliefs about what works and doesn't work in Parkinson's research, and then also be responsible for ensuring they found scientists willing to work on that person's beliefs, and funded the whole thing to boot??

Do you believe this is how science should work?

Or should science function in a way that looks at the scientific evidence, and then pursues it based upon its findings and data?

Look, I hear your frustration. Anyone who lives with Parkinson's or has a loved one with it is looking at a ticking clock. But that's also true of dozens of diseases, including many, many more people with things like cancer.

If the solutions to these problems were so obvious and easy, they would've been cured decades ago. They are not obvious, however, nor are they easy.

And yelling at a nonprofit organization in the same field that does really, really good work isn't going to help anything. All it helps you do is make you seem like a jerk who doesn't care dragging an organization's good name through the dirt, based upon nothing but conjecture.

If you have facts to back up your conjecture, I'm all ears. Otherwise, we're going to close this thread because we don't traffic in this sort of gossip on NeuroTalk.

DocJohn

I read the article. Maybe you should also read it again. Only half of the original set of participants chose to continue in this study of GM1 for 5 years. Why is that? If the medication was so effective, why wouldn't the researchers get all 48 people to participate?

So you start out with a tiny, non-randomized study of just 26 of those original 48 people.

After 5 years, guess how many are still in the study taking GM1? 10. 16 people dropped out of the study over time.

Again, if GM1 was as effective as you believe, these are not drop-out rates you would expect or want to see in your study. They are horrible drop-out rates.

So GM1 has potential. More research is needed. Researchers get funding for research generally through a variety of mechanisms -- government, pharma, research organizations, etc. -- so no single mechanism can be blamed for not funding such research.

DocJohn

GM1 is definitely on our radar but there are some challenges with moving GM1 forward to a larger community that explain why it is not being pursued more by pharma at this time. In order to administer GM1, it needs to be purified from brains. The brains used thus far are bovine – cow. So, while the early information *may* be providing some proof of concept, we have a real practical challenge to use as a therapy.

The concern is that although there may be neuroprotection in preclinical models, and possible symptomatic benefit in PD patients, are you ultimately subjecting the study population to potentially developing another disease in the future. Given that bovine spongiform encephalopathy (ie. mad cow disease, a prion disease) can be transmitted between species, there would always be the possibility that along with the GM1 one purifies, some prion protein comes along with it. Alternatives for this source have been proposed, including sheep – but sheep can develop scrapie, another prion disorder so again, there is cause for concern.

Given the potential for GM1, we are currently supporting 2 efforts around this:

Jay Scheider is being supported our on our Rapid Response program to examine an enzyme upstream in the pathway that ultimatately promotes the generation of GM1 to see if altering this, provides neuroprotection in a preclinical MPTP model (see more information on our website: https://www.michaeljfox.org/foundati...?grant_id=1010).

A small biotech is about to be supported through our Rapid Response program to evaluate a human source of GM1 to provide neuroprotection in a preclinical MPTP model. It will be compared to the ‘gold standard’ of bovine-derived GM1. If efficacious, one could potentially move this forward rapidly (abstract not online yet because contracting is not yet complete).

Debi

PS. I know it is frustratingly hard to get all scientific questions answered--we do our best to put all our work on our website to mitigate that challenge. But, our program team could spend all their time explaining details around every target we are investigating as well as defending every decision they make regarding which grants to fund and which not to. We review over 800 proposals a year and our portfolio has more than 350 active grants at any time. This requires an extraordinary amount of work and dedication on the part of the team...please realize we are aggressively pursuing many avenues even if we don't pause to provide all the details in emails or on our site.

Those of us who lived in Europe in the 1980s as part of US forces (or their family members) are not allowed to donate blood because we ate red meat from Europe during that time period. This is because by eating that meat, the US gov't is concerned that we might have become infected with mad cow disease. I have never heard that any US forces or family members did come down with it, and I don't know how long this restriction will last.

Jean B

[QUOTE=pwpboy;918486]That's what they make you believe. Read this article:

http://www.ncbi.nlm.nih.gov/pubmed/20206941


Hi,
I sent a mail to Dr. Schneider requesting his views on this topic and will post it when I get a reply. I just noticed Debi's response, so he may say the same thing or may be more.....

Girija



J Neurol Sci. 2010 May 15;292(1-2):45-51. Epub 2010 Mar 5.
GM1 ganglioside in Parkinson's disease: Results of a five year open study.
Schneider JS, Sendek S, Daskalakis C, Cambi F.
Source

I was moved to respond to this thread for several reasons:

1. I do extensive healthcare research (some on PD) with NIH support;
2. I also get pharma company support
3. My wife and I make substantial contributions to MJFF each year

Overall research is slow and painful. I often wish the cure for PD was as simple as finding the single agent that completely reversed Parkinson's. I am convinced that we will eventually get to a cure, but PD is a complex disorder and may even be a set of disorders currently being called the same thing. (Think--a "cure" for cancer. There are multiple types of cancer and there are multiple agents and approaches used for different cancers.) Although I thought differently when my wife was first diagnosed with PD 9 years ago, the "cure" for PD will probably come through a series of smaller breakthroughs and paradigm shifts. The last, best such change came to PD in the form of DBS and we are all waiting for the next big thing.

Having worked with the pharma industry for 15 years, there is no pharma company that I know of that wouldn't want the breakthrough drug in an area like PD. There is a big market that is getting bigger (unfortunately) and the company that has the first to market game changer product will have a blockbuster. Do you think that anyone is making serious money on generic carbidopa levodopa?

National Institutes of Health (NIH) is contributing to PD research, but total NIH budget for all disorders together is really quite small (about $30 billion requested for 2013--the NIH Institute focused on neurology and all neurological problems gets only $1.6 billion for all of these problems not just PD.). When you compare this to all military expenditures for the US requested for next year (about $1.2 trillion) you can understand why getting NIH grants is a lot harder than getting money for building new military equipment.

Lastly, I want to mention that MJFF is trying to do a lot with their resources in multiple promising areas. There is no value in getting angry at them. They do a fantastic job for all of us affected by PD and should be applauded.

pwpboy is obviously frustrated with the slow pace of things, but making scurrilous remarks is unhelpful and given the nature of the internet can ultimately be destructive to the process that all of us wish for.

My question is why are we arguing about this and ignoring that due to rigid, dogmatic thinking we have barely scraped the surface. Without people questioning the status quo we will get nowhere. I think that is what PWPboy is trying to do but he just over channeling frustration to MJFF. (BTW, I am truly appalled at how he is being treated here.) In a way it is a compliment to say hey we you have done such a great job, don't stop there we expect more of you. Backhanded but still a compliment. I see this thread by being dominated by pragmatists or doers, but we need each other to lick this. Without dreamers or risk takers we would end up getting nowhere.

Perhaps we do not need to keep throwing money at scatter shot research that goes fallow. We need someone to organize and manage research beyond cute, marketable groupings like Rapid Response or Fast Track. We can send a man to the moon but go limp and become helpless in the face of finding, not a cure, but even accurately labeling PD as prion, autoimmune, etc. I thought disease was classified and studied based on commonalities - that is the most basic scientific endeavor to identify, label and organize. It is two centuries, and we are just now studying Charcot's vibratory chair and still cannot determine that with the myriad genes involved and the many different pathologies that maybe we should not treat it as one disease entity?

It took Marshall, the scientist who discovered that H. pylori bacteria causes ulcers 25 years to have colleagues concede he was correct and he had to make himself sick, and treat with antibiotics to be acknowledged by his peers. A scientist in the 50's proposed the same hypothesis. Both were shunned. Why does that happen? We need people questioning. Cures do not usually result from beating a dead horse.

I am not blaming any one entity but looking at this from a larger perspective. If society truly prioritized ending disease and suffering we would not be here heatedly discussing this now. Do you think when they shot for the moon they just dumped a bunch of money to academics and said here do this, find a way? No we ended with NASA, a dream team of experts who had a guided mission.

Health and Disease are commodities to be bought and sold. Space travel is good for us all or so goes the propaganda. This is why we still have millions dying of malaria. Methylene Blue derivative was shown an effective treatment in 1910. Can anyone give us a good reason it has not been fully explored and developed? It is now just in clinical trial. I don't buy the it is just slow theory. There surely is no risk of contracting a prion disorder.

http://="http://www.news-medical.net...bs-the-spread-

I can say if we had a disorder growing by alarming proportions of men (and women) who all of a sudden loss the ability to experience sexual pleasure we would have the equivalent of at least three NASAs working on it. I think the level, funding, and design of research would be entirely different. This is tongue in cheek but you get my point.

Disease is an industry in our economy and to think that people do not profit from it even though in a non profit endeavor is a bit naive. The difference is in the corporate sector money is allocated to generate profit. In the research world money is allocated to generate more research. If a cure happens to be "discovered" along the way oh lucky day. We are supposed to believe that with no structure, oversight, meta-analysis, and sharing that a cure will emerge from this chaos? Scientists could be tripping over a cure every day now but how would they ever know it? Business people know this is essential to reaching a goal. We have multiple individuals in form of scientists not sharing information and overlapping or replicating the same studies. They all have the same goal what is needed is team effort and a game plan. This along with rigid thinking is why things move at a snail's pace.

If you want proof that a better alternative does not exist look at what 23andme has accomplished in three years. They have applied for a patent on a novel treatment for LRRK2 PD carriers. I am thankful we have MJFF, but we need more outside the box larger picture thinkers like the Brins if we want to see real progress. They get that it takes dreamers and doers to see change.

Unless I have missed something there is absolutely no proof that BSE or Scrapies or Chronic Wasting diseases are transmissible through ingesting infected animals. This is a theory only that has been spread by media as fact.

Normally I would cite research studies but too many claim spread of BSE through oral route in lab animals. We are talking transmission from animal to human which I don't think we have an accurate or ethical model for. These anedotal facts; however, do not support ingestion of infected meat as a cause of human prion disease nvCJD.


a) People have been directly eating Scrapie-infected sheep since the 18th century and have not contracted a brain-debilitating condition from their lamb chops. Indeed, in Iceland, farmers tended to eat Scrapie-infected sheep, but up to ten years ago, the last period on which we have information, there have only ever been two cases of nvCJD (Scotsman, 28.3.96). Sheep brain also used to be sold as a delicacy in every butcher's shop in Scotland until recently.

b) Countries such as New Zealand, where Scrapie is unknown, still record cases of CJD (Independent,22.3.96).
We still don't know for sure but only it is a given. I can understand the concern. However, I find it highly ironic that we are concerned with this giving us another disorder when PD is likely a milder human variant of BSE. That is PD looks to be a prion disorder along with AD and ALS. The Nobel prize scientist who discovered it is stating so publicly. Interesting to see how long it takes for studies to reflect this?

imho pwpbody stepped way over the line with his accelerating attacks on the MJFXX that could not be substantiated and for which he became more beiligerant when anyone responded in their defense. i think the administrators warned him a few times before banning him.
personally, i think there is a lot of research going on in pd that is not profit driven and the biggest problem is finding clinical trial participants, it takes forever.

i totally agree we should have a moonshot for pd and also for alzheimers, which will bankrupt this country unless a prevention is discovered. i'm not holding my breath for a cure for either. but if you use cancer as an example, they are predicting they can turn it into a manageable disease and just a few key findings have turned the corner on that disease(s). it's too bad this world wide economic crisis occurred, it has diverted funding and attention from healthcare research and developing comprehensive research strategies. hardly a peep from either candidate on direct funding for disease cures/prevention to lower our healthcare spending, someone with a chronic disease is very expensive to treat over their lifetimes

let hope MJF's tv show has a long run