Indeed, if you look up other Parkinson's nonprofits in Charity Navigator, you won't find one that spends more of its money on direct services (Program Expenses), or one with a lower percentage of administrative expenses.

For instance, the Parkinson's Disease Foundation's and Christopher & Dana Reeve Foundation's admin expenses are 6.1%, National Parkinson Foundation's (FL) are 6.2%, Parkinson's Action Network's are 11.5%. Compare these numbers to MJFF's admin expenses of only 2.2%.

That is a sign of a well-run, lean organization.

DocJohn

pwpboy,
this is personal matter between you and the mjff, assuming it even took place exactly as you described, which noone can prove. for me at least, the credibility and motives of anyone who makes such unsubstantiated claims comes into question, especially when brought up on a message board where the majority of posters are long suffering from pd, would have to go to great effort to absolutely refute your accusations so likely wouldn't, and even then you'd likely want to continue this thread ad naseum, and we don't need the unnecessary aggravation.

imho, your're basically trying to create a controversy where there is none. i can only speculate as to why.

We are with Jeanb. Most of our donations now go to MJFF. Our son recently married and asked for donations to MJFF instead of wedding presents. We were more than touched by his and his bride's gracious efforts on his dad's behalf (as well as all others in the PD community). madelyn and Richard

I will point out that MJFF is the only org that actually listens to our little group in the person of Debi Brooks. It is unusual for a bunch like us to have access on that level. Part of the reason is that we keep things on a rational basis and another part is that when MJF first got his diagnosis he ended up getting help and support from the folks here although no one knew who he was. Yes, Debi and the others make a lot of money. But as anyone who has worked with a large non-profit can tell you, if they keep the funds flowing in at the right level then they have earned every dime. It isn't as easy as it looks.

Yes, soccertese, we know already. Very few people have credibility in your eyes. Got that. I just tell the story as it happened. If you don't believe it, that's OK. I don't need you to believe my story.

I can see people don't dare to question MJFF. Reveret, you say MJFF is the only organization answering questions to PD patients. That's not true. There are others that also do this. I know because I contacted them. I advise you to try yourself and you will see.

Seriously, I don't care a damn thing about anything at all. I only care about the GM1 ganglioside story. GM1 works !!! It is shown in a 5 year long clinical trial I AND in a clinical trial II. It is safe, disease-modifying AND symptom relieving. For years, competitors have been saying GM1 is unsafe and unhealthy but the trials showed it is not. Clearly there is a force trying to hold up GM1 therapy. The only thing I care for is if there will be a clinical phase III trial or not; and if it will ever be a therapy. If this therapy isn't pursued by the Parkinson's organizations, then they are not doing what they should do. This is not the result that I expect. And therefore, I stop supporting any donation to any Parkinson's organization unless one of them decides to support GM1; than I will support that organization.

For all those that think I am not credible and MJFF is credible ... how much money would you bet that there will be a clinical phase III trial of GM1 ganglioside ? I dare to say I would not bet a single penny because I can sense that this will never happen.

And Reverett, as for Debi Brooks giving info and gaining a lot of money ... I don't mind people that do good research get a lot of money. And the info she gives is usefull. But why doesn't she speak up about GM1 ganglioside ?

And don't forget that MJFF does not have an endowment; all money taken in is spent on the here and now - they aren't saving for a long term future.

The staff at MJFF is worth every cent in salary they make - they are exceptional, and work long hours on our behalf. I am a witness.

And, cs, your statement that "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." is inflammatory and simply not true. No need to throw bombs, especially at the one organization who is leading the PD research agenda worldwide. They are on our side.

pwpboy.... It's clear that you have an ax to grind, which is fine, as you're a new member here and apparently don't really care about your membership with us, so much as advancing your own personal agenda.

We've given you the facts, and yet you still refuse to listen to them. MJFF has no direct relationship with your GM1 story, so I might suggest your ax to grind should be somewhere else with other parties.

I don't think you're not credible, I just don't think you're looking at the facts. Which is fine, that's your prerogative, but we can't really argue in a coherent manner with a person who denies these kinds of basic things...

DocJohn

Why I have taken a "show me the results" approach to the progress being made in the here and now. So far, only the good have died young in PD research, and it seems like an obvious route to a very probable solution to many disease states in cell therapy has been too long underrated and underfunded, 'sall.
What we NEED are courageous biologists, those at the forefront of neurology, to be empowered and supported by society. Now that's really ' sall

That's exactly what you will find at MJFF - the process takes a long time. It just does.

Huh ? What a terrible thing to say. Because I say something bad about MJFF, you are threatening to stop my membership ? So is one of the prerequisites to be on the forum to only say nice things of MJFF ?

but we can't really argue in a coherent manner with a person who denies these kinds of basic things...
DocJohn[/QUOTE]
You can argue with me, but you refuse to do so. As I indirectly said, the financial aspect and how the money is really divided under employees is the least of my concerns. That's why I am not digging further in it. The only thing I care for is that if I support an organization to find a cure, and something good is available, they should pursue it. Sayig MJFF has no direct relation with GM1 is a very weak excuse because my point of view is that they SHOULD have !!! They SHOULD have and they STILL should.

I can see you are standing up for MJFF and try to make me look like the bad guy. But I am not the bad guy in the story. My role is to stand up for patients with PD. MJFF is supporting GM1 ganglioside research, but with sialidases now. This is good. But frustrating. Something is out there that stops PD progression but it is not offered to people because it is not a pill. So now they are just hopping to something else, that maybe might not even work nor be safe. And if it works (big IF), it will take another 10-15 years before patients can benefit from it. In the meanwhile millions of patients will or be dead, or be very disabled. And my opinion is that this is ethical and morally not tolerable and that GM1 treatment should be provided ASAP in the clinic untill a pill shape is found. That's what I am standing up for. And that's why you are making me look like the BAD guy.

You know, I know I will not make myself popular saying these things about MJFF. I knew that before I posted. But honestly, I couldn't care less about my popularity. Popularity is old school. I only care for finding a cure. Pressure needs to be put on the medical community, especially when a cure is there. I am not going to sit in my chair and nicely nod "yes" to an organization because else people will not think I am nice and popular. I want a cure ... at all costs !!! And that is what thrives me.