MJFF recently launched the Web-based Clinical Assessment program — another example of our interest in the development of research tools that will help speed the availability of life-transforming treatments for Parkinson’s disease. Under this initiative, the Foundation hopes to spur the creation of Web-based tools that would allow any patient with a personal computer and an Internet connection to participate in clinical research from the comfort of their own home — increasing participation by those who might otherwise not be able to take part and speeding research progress. Read more on the Foundation’s Web site.


On April 28-29, MJFF, together with the U.S. Food and Drug Administration and the Parkinson’s Study Group, co-sponsors the 2008 American Association of Pharmaceutical Scientists Workshop — Demonstrating Disease Modifying Effects for the Treatment of Parkinson’s Disease: Drug Development and Regulatory Issues. The workshop will bring together leading researchers to focus on overcoming a major challenge in the development of disease-modifying PD treatments: the lack of scientific consensus on how to design a clinical trial to conclusively demonstrate neuroprotection. Read more about this meeting and visit our Web site for a full update on research news

I looked high and low and could find no opportunity for patient input other than monetary. Almost as if they don't want it. (Input, I mean of course.)

MJFF makes no bones about being entreprenurial. They are all about business and science, and consider Michael enough patient for the rest of us. When I say 'they', I don't mean all of them - i don't know how each person feels. The co-founder, Debi Brooks, had a policy of no patients at scientific meetings. With the celebrity factor, perhaps patient input is too overwhelming.

There has been some headway made at including patients at meetings. Nevertheless, they totally "get it " in terms of innovation and looking at ways to get treatments started and over the initial expensive gap until the treatment is picked up by a larger company. And they have their finger on the pulse of the patient perspective. I think they are doing all the right things. The new electronic records software is another example of this, although they are not the first to try it.

They have a patient that is worth big money and he is bringing it in. This benefits the whole community - but with patients there is always a human, compassion factor that is missing when it's all about money, not to mention the knowledge that only patients have, particularly in how they measure progress in cinical trials. There is no solution to this, really.

As a side note: if you missed the announcement, one of the foundation's key persons, a former vice president, Joyce Oberdorf, is now the new head of NPF. I am looking forward to seeing what direction NPF will take under her leadership.

paula

If you don't have the slightest bit of cynisicm for MJF. I, for one, have been following his "contributions" to the "elimination of PD" for as long as he's had PD. Now, first of all I"m going to say waht I beleive , MJF I believe IS COMMITTED to tackiling PD; he has done a bang up job of collecting money for research, but I also have other opinions that MJF hasn't done damn hear anything for the "common PWP". I'm not saying that he is not giving his money to researchers, but i am seriously questioning the productivity of the people that he has chosen to lead his "war machine". What my mind's eye has seen over the years is that a ton of cash comes in, there are committees, and conferences and you name it, sponsored by the MJF millions for the benefit of bringing up the careers of certain people on his team, but I personally think that he has been unfortunate to have chosen a bunch of scientists that are more interested in putting "worked for the MJF team on PD" , and a lot of PD CURE IRRELEVANT MATERIAL into their resumes. I do, have some experience when I say such things, but I would be a fool to elaborate, they KNOW what's wrong with their "team". It is something of the things that i encountered as a research scientist in my life before PD. First MJF is running what could be compared more a private than a public funded research organization. Second they have cash , but must make very careful decisions on how to spend it and who it will go to "what i call the "smiling face factor". So far a lot of cash gets shredded by incomplete studies (a good researcher leaves because of problems with the management hierarchy style/ Another cash drain is that MJF's team is looked at as a cash cow by researchers who have managed to obtain their laurels , but have never really done anything important or useful in their careers, except their abilities to convince their peers that they are doing "something" towards the stated goal.
I say this because I believe that it's real. Us PWP are dying out here, losing a little more each day, not knowing just what goes on in the minds of so called PD researchers. A researcher is just a human being, but it would surprise you to know just how little they REALLY care about the hundreds of thousands of peopele who are slowly having the life sucked out of them by this big ugly snake called PD. To most it's just mo money and a big ego trip.

I do agree with cs. MJFF could "publicly" bring patients to their table, and many would jump at the chance to do so.

There are not patients on their board or any other type of committee that I can see, with the exception of Team Fox.

Fair enough, it's hard to know what's real in that world of celebrity. i think they confuse disease land with TV land sometimes. Patients are viewed as fans.

I wasn't aware of what you speak of about researchers not finishing. I don't know about any of the interactions between the staf - hierarchy, egos and such. You are thinking that researchers are taking advantage of MJFF and staff is more on ego trips and less concerrned about curing?

i have had cynicism about MJFF, but for different reasons, mostly concerning patient input. After the GDNF debacle, they started listening and actually brought us to New York to discuss it for a day. Since then, other issues that they are studying that patients have been loud about are sham surgery, substituting for GDNF with ceregene in a quick moving study, and now electronic records.

It is all about money. But they are private and can do what they wish. They may waste it, but they don't sit on it, as others orgs are rumored to do - saving for new buildings or what not.

MJFF personally isn't in a position to do much for the common patient. He started out relating that way, but has had it as long as I have - he was DX at 29 or 30 in 1991? I think. I get angry sometimes about how he says he is doing so well and everything in his life is so perfect. Teeth clench and one can't help thinking - would it kill you to answer this email -it's important!

But he understands like no one else and so does Andy Grove. if there is work to be done in the foundation, I would suspect Andy would speak up. After all, he has invested over #20 million and bequeathed $40 more million. He isn't going to tolerate incompetence. Andy Grove still thinks GDNF should be given another shot.

That's very encouraging. But will it happen in time? The magic question. My money is on MJFF because it is about money - they have it, and they have two patients whose lives are on the line. Another way to view would be - just think of where we'd be if Michael never got PD?

paula

I sent this link to MIke....speak up but be nice. politeness is one of his best qualities. It really helps to know who is doing what and where are the pwp in terms of length of disease and knowing what information..

Money should be talked about. And put to best use. This is his forte, A for effort.

I've sent links before when they concern him or the foundation. Nothing up my sleeve. Just trying to communicate information. That is what teachers DO. I"m programmed.

paula

My own view is that MJF is so insulated from the real world as to be irrelevant. He is surrounded by a very efficient gate keeping structure that assures the perpetuation of a group of interests that are not ours. I wonder just how often he communicates with an intelligent and concerned PWP who has not been vetted by his handlers? "Electronic records"? Hah! That is the type of project that is proposed by a group that plans on being around a long time.

I have a proposal for MJFF. Take ten million dollars and break it up into 100 grants of $100,000 each. Award them to the most heretic, obviously wrong, and off-the-wall researchers to be found. Perform scientific triage, we are bleeding out here.

There are many avenues to be explored that already show promise. Even in my own blundering way I have built up a file of about 50. I would give it to MJF without thinking twice. But he will never know the offer is there because his handlers don't want their boat rocked.

When i said MJF's research group was private, many of you must have said to yourselves "of course it's private, there is no government money going into his organization! Well the difference is that it it a privately funded "not-for-profit" organization,which makes a big difference because at the end of the day. MJF doesn't have to show his "shareholders" (read- you the people who gave money in the expectation that collectively, your gifts will mean something and get somewhere") how much the dividends will be from development of any new "products". In other words, unlike a CEO of a fortune 500 pharmaceutical company, MJF doesn't have to answer to anybody (except maybe his wife and kids, and i don't mean that snidely in any way) why his enterprise hasn't done anything to get significantly closer to OUR goal in any particular year.
In big pharma, the top managers have discreet goals every year, say add another "branded property" to fill in a "hole" created by the "income rupture" of a major product coming off patent in an area that they have defined as their "core business structure" Usually the CEO assembles the best people in the field of interest ; people who can lead up teams of expertise in the area, people known to produce results, but generally at a high cost. When these people come "onboard" they negotiate their salaries and other details of autonomy in staff choice and the necessary budgetary resources that they believe they will need to carry out the task set before them. They usually have 5 years to make good on their contract, or out the door they go, usually with a "tarnished reputation". The CEO then has the agonizing decision of dropping the program, or throwing more resources into it based on how far the top research team tell him they have come at reaching a reasonable target in a reasonable time.
MJF doesn't have to be put under the microscope, due to obvious "should have dones", as retrospect becomes clearer. Nor does he have to worry about losing his job, hell it's his money, he can spend it any way he wants to; he is not constrained by the normal business rules of "for profit "companies. It is therefore "normal", that research outfits of the "private, not for profit" nature attract only researchers who are either well heeled (scientific pedigree), or otherwise well known for some piece of research that they have done in the past, have made a name for themselves as "expert" in the area of research tend to bring in their cronies, and rest on their laurels. This allows the directorand CEO to say "see, we've brought in some big guns", but in reality, what they get "stuck with" are usually bright people with a good name , but are near the end of their productive scientific idea generating careers, who really don't need the high pressure of "getting it right" research, and so the institution suffers from their lacklustre performances. The people that they hire are only their to further their careers by publishing papers on PD research whether it be on the subject but completely useless to the DD community who are in bad shape. These publications now are used to get into a "serious" well payed job because the applicants have demonstrated that they understand modern biochemical techniques. So these kinds of institutions are much like the post-doc system, yet another "training ground" for the better scientists who will jump ship for a better job anyday.
One final word on researcher ability and loyalty. First researcher ability; "one only rises to the top of their level of inability" You can't make people shine and be charged up every day, if they don't have the training to do their jobs with confidence and determination to succeed. Now loyalty. An employer can start a new researcher at a certain level of compensation, but if, after a few years, they are not brought well up into a good pay rate (and they well deserve it) to show them that management is happy with their performance, then, they won't get loyalty. Loyalty is one of those indescribable factors in the successful employee-employer relationships. It is fragile and very easily broken by even an unseen micro-time-scale event of one big shot trying to lord over an underling. IT makes all the difference whether the researcher lives, breathes, eats, etc., always thinking about their research and ways of seeing a project to an end. Invention occurs because the inventor has the NEED to invent. Break that fragile gossamer thread, and you have thrown away a loyal, productive employee. People are the most important factor in any research endeavor; they literally make or break research efforts. Happy, well paid people, getting along well, is the secret to any research success. I suspect that there are some problems with motivation and retention of focussed , dedicated top researchers in the MJF PD organization (AND OTHER AS WELL). Let's hope i'm wrong, and just an ignorant wind bucket

reverett, regarding your point about funding off the wall stuff, have you taken a look at the database of grants awarded on the MJFF site? (you probably have, but i have to ask!) I believe their Fast Track program is or was intended to function something like that.

also, they have funded quite a lot of grants - have you checked that database against your 50 promising items? it would surprise me if there was zero overlap.

here's a link to the database - personally, i think it is the best part of their new site:

MJFF searchable database of grants awarded

and i don't know about MJFF (have you contacted them?) but *I* am curious about your 50 items - would you, or perhaps have you posted them here?

thanks,
boann