I contacted the MJFF foundation to ask them whether there will be a clinical phase III trial for GM1 ganglioside. This is the reply I got from them:

Dear pwpboy,

Thank you for your interest in the Foundation. We apologize for the delay in replying to your email. The Foundation is interested in all research that seeks to find a cure for Parkinson’s disease and develop improved therapies for those living with Parkinson’s today. To find information on the activities and research of the Michael J. Fox Foundation for Parkinson's Research, please visit www.michaeljfox.org.

Thank you again for your patience and for your interest in the Foundation!

Best Regards,
Research Team, MJFF

And I really had to wait a very long time to get this response. What are the conclusions I make from this:

1. There will be no clinical phase III trial, despite the very good results in clinical phase I and the clinical phase II. (Clinical phase II results are good but still need to be published, but in the other forum the professor already stated that the clinical phase II results were very promising.).

2. I will stop donating money the MJFF. If this is the way they reply to people that donate money to them, then they don't deserve any donations. Moreover, as GM1 ganglioside seems to be promising, but they are being very mysterious about it, it seems something fishy is going on. And I don't like fishy things. I don't donate money to create jobs for people. I donate money for the sole purpose to find a cure as fast as possible. As I can see from the way the MJFF is dealing with it, they do not have the intention to find the cure as fast as they can. And therefore, my donation will stop as we speak. I already donated hundreds of dollars to the organization. I wished I didn't do so.

I can appreciate your disappointment with the response.

I take issue with two of your points:

I. What proof do you have that bogus jobs are being created within mjff.
II. Why do you say mjff isn't interested in finding a cure.

I support mjff, IMHO it has dramatically raised the profile of pd and through the misfortune of mjf shown that pd isn't exclusively an old persons disease.

Neil.

I find their response perfectly acceptable and object to your post which i assume you made to encourage board members to also stop contributing to the MJFF -- because you didn't like the way they responded to your email? Otherwise, why make the post?

I hope you give them a 2nd chance and also realize you are publicly making some pretty strong accusations.

I am very dissapointed. The first time I contacted them, they ignored me. And the second time I got this bogus response.

Concerning the first point ... if an agent has been discovered that can hold the progression of PD like GM1 ganglioside can do, then every other penny spent on meds for symptomatic relieve is a waste of money. Do you know that the professor's research advanced extremely slowly because of money issues ? This research should have got ALL privilige. If the organization would really be pursuing a cure, the professor should not have been in financial problems since the first day MJFF heard of it. I am not funding to create research positions for symptomatic relieving agents and support big pharmas to get rich. I am not saying the symptomatic relieving agents are useless, but if something like GM1 ganglioside pops up, I expect that every penny I donate is spent on it because this is what PD patients are craving for. And ey, big surprising, besides disease-modifying, GM1 ganglioside is also symptomatic relieving. So why the hell should I be sponsoring everything else ?

Concerning point II, I think big pharmas don't want a disease-modifying agent yet. They want to keep selling symptomatic relieving meds untill they squeezed every possible penny out of PD patients. Afterwards, they will come with disease-modifying meds. And MJFF is just doing what pharma wants because they are the one that need to bring the meds to the shelves. If they would be pursuing a cure, then why did the professor had financial problems ? There has been no other agent before with more promising results in pre-clinical testing than GM1. I think MJFF didn't even donate 1 single penny to the professor. I think it was the NIH that sponsored his clinical trials. And what's up with all the bogus reasons they give for not having GM1 as treatment ? And why all the mystery about the possible phase III clinical trial ?

I refuse to donate if they don't pursue the real cure. As I said, I am not interested in donating so big pharmas put the real cures on a hold for a moment so they can still maximally benefit from new symptomatic relieving agents.

Yes. Now, big pharmas have the tools to better screen for symptomatic relieving agents and they can keep selling us bogus that doesn't cure us but gives us some releave.

Well, at least this is how I see it. I am sure we will never get a clinical phase III for GM1 ganglioside. There are some forces that don't want us to have it.

What's acceptable about their reply ? That was not even an answer on my question. That shows a total lack of respect.

It's not only the way they react on my email. It is the fact that I have the feeling there is something strange going on with the GM1 ganglioside. MJFF has invested nothing in this professor's research, despite the fact that his research has been known from the late 80's. If it wasn't for the NIH the professor couldn't have finished his clinical trials which he planned to start in 1999 but due to a lack of money started it in 2005-2006. So seriously, why do I even bother to donate money to them if they didn't even sponsor 1 dollar to the investigation of such an encouraging and promising agent ? Trace back the history and how the research evolved. And trace back who sponsored the studies. And then make your own conclusion.

I am making pretty strong accusations because we are all sick and a "cure" is out there but it is not being pursued. They are testing the most extreme and life threatening stuff and use people as test monkeys ... for what ??? What will they say to the people that have been in the clinical phase I and II of GM1 ganglioside ? "Yes, it works but trials are over so now go home and decline." ???

Maybe I am wrong and there will be a clinical phase III for GM1 ganglioside. But I really doubt it. It is not only MJFF that has been mysterious about it. I also contacted the professor. On the contrary to the MJFF he did reply in a decent way. But he didn't give the answer. He said he would get back in touch, but I have the feeling this will never happen. This is all way too mysterious to me. There are many big pharmas investing money in clinical phases. If GM1 makes it to the public, most of these trials can go into the garbage bin and it was all a waste of money. Big Pharmas can't be happy with this. And as you know, big pharmas control the world. They decide which disease gets cured and which one not. And those who have the disease and their relatives ... they will have to suffer. They can do so. But not on my expense.

Let me see if I have this straight. You received a form letter rather than a direct and immediate answer to your question, and from this you deduce the MJFF is not interested in finding a cure? Uhhhh right. Oh wait you have donated hundreds of dollars, so you are entitled. Of course.

Someone else claimed that the MJFF spent 2.000.000 dollar to 5 senior directors, a CEO package of 500.000 dollar and a "deputy director" they paid 300.000 dollar. And to which new usefull product did the MJFF lead until now ? ... Nothing. It's all a cat in a bag.

So you finally got the picture right on! That greed and graft are rampant in all kinds of research is a given. That the Mjff has mismanaged it's research mandate has been sadly evident over the time since it's inception, and yes a lot of windbags and cronies and leeches have reduced it to a less than honourable entity. I Am too sick and tired to care anymore.

First, I'm not sure why you'd be asking an advocacy organization that has nothing to do with a particular researcher's research about the status of that research. Why not ask the researcher themselves??

Or even just Google for the answer, which I just did by entering in the following into Google:

The 4th result in my search directed me to:

http://www.parkinsons.org.uk/pdsforu...funding&page=3

which provided about as much insight as you're going to get, short of talking to the actual researchers (or their assistants) who conduct this research.

Second, any nonprofit organization's financial statements are readily and freely available directly from the organization, and usually their website. In the case of MJFF, here's the latest statement:

https://www.michaeljfox.org/files/fo...ments-MJFF.pdf

So you don't need to repeat gossip here... You can actually look at the facts yourself and argue from actual data, not claims others make.

Here's an organization that grew contributions from 2010 to 2011 by 23 percent in a down economy. From a nonprofit standpoint, that's amazing, as most nonprofits have been suffering over the past few years.

Charity Navigator gives the MJFF its highest rating of 4 stars:

http://www.charitynavigator.org/inde...ary&orgid=7597

It also received the highest rating for transparency.

Here's their 990 that shows their previous CEO received $276,684 in compensation and the present CEO receives $388,891 in compensation. When running a $97 million organization, these numbers are not out of line for a large charity. Their individual trustees and members of the board receive zero in compensation according to their 990. Their top 5 officers -- the people who actually run the day-to-day stuff -- receive a total of $987,000.

https://www.michaeljfox.org/files/fo...inspection.pdf

In a vacuum, these numbers are meaningless. Compared to other charities this size, they are in line, perhaps a little higher, with what top executives make in the nonprofit world.

So I'd suggest before throwing stones at a charity, one actually spends a little time on Google and on the charity's website to get the facts. Thanks.

DocJohn

MJFF has the lowest overhead costs of all the Parkinson's orgs which means it does NOT have bloated admin costs. It targets donated money quickly and intelligently. Of all orgs this is the one I trust and admire. I wish ALL research money went to MJFF to distribute instead of being frittered away amongst the other competing PD orgs..

Jean