[slapdasch2]

I wonder if I'm the only one who thinks Parkinson's advocacy groups are falling down on the job in at least one key area. We in the Parkinson's community are constantly encouraged to contribute money and contact politicians for the purpose of furthering "Parkinson's research." This "one size fits all" categorization is troubling in the sense that Parkinson's research has a decidedly Orwellian bent to it: Some specific areas of PD research are more equal than others.

The NIH has web pages that list various diseases and conditions along with information about clinical trials they are funding. Taking a recent look at their Parkinson's materials, I found a list of over 200 PD research studies, some recently completed, some in progress, and others on tap for the near future. While I did not make an exact count, I'd say that 70-75% of these research projects were along the lines of, "We've got this new pill and we want to know how effective it is in dealing with some aspect of PD."

Of course, it's understood that research into PD and other diseases/conditions is driven by BIG PHARMA, but the extent of the overemphasis on this sort of invasive, pill focused research is striking. A recent article in my local newspaper made a big deal of the fact that cognitive deficit related to PD was a neglected issue starting to engender needed research attention. And, yes, the reader is supposed to get excited that pharmaceutical companies are coming out with new medications to treat cognitive decline in people with PD.

The idea of new pills for treating cognitive loss in PD patients is especially laughable, considering drugs like Requip and Mirapex may well have caused the problem in the first place. And, by the way, Requip and Mirapex, while developed fairly recently, have been around long enough to merit some research into their possible long term negative effects. I don't see a rush to initiate this kind of study, precisely because it might hold a company accountable for a shoddy product.

Perhaps it is about time for PD advocacy groups to parse the whole business of a research agenda and make some value judgements based on variety and actual utility.

[indigogo]

slapdash -

The Michael J Fox Foundation parses the research. They work in close collaboration with the NIH, and fund the most promising science that will actually help patients. If they don't fund it, it means 1) somebody else has it covered, 2) they don't believe it is worthwhile, or 3) they don't have enough money.

Concerning #3, they actually have a list of the important research that is NOT getting funded because there is not enough money.

MJFF works closely with industry and the government. At the PAN Forum in Wash, DC this year, every single one of the speakers from the NIH mentioned their relationship with MJFF, and this included the head of the new National Center for Advancing Translational Sciences, Chris Austin, and Story Landis, Head of the National Institute for Neurological Disorders and Stroke.

They also work closely with patients. They are doing final work on their Patient Centered Research Tool, that will collect self-reported patient data, which will launch early next year.

I you want a cure, put your money on MJFF. I do. I live on Social Security, and yet think it is important enough for me to donate $25 a month on an automatic, recurring basis to them. I know that doesn't sound like much, but look what Obama was able to do on the backs of thousands of people giving $10 a month.

This is an educated investment. I am lucky to be able to interact with MJFF staff and research scientists in person twice a year at meetings in NYC, and on a continuing basis through email and phone calls throughout the year. I have gone to PAN forums every year they have been held since 2002.

MJFF is in it to win it, and they are smart, tenacious, and well regarded. They fight for us.

[soccertese]

slapdasch,
are you just venting or do you have specific actions you'd like to recommend?
you are sort of implying were're all asleep at the wheel.

[indigogo]

I don't mean to sound like I'm trying to stifle dissent when I cheer-lead for MJFF. That should never happen to us; we should always be looking in unlit corners and questioning EVERYTHING - and I applaud slapdasch for that.

But I also cannot fail to try to let people know what a comprehensive job MJFF is doing for us, and that it makes me sleep soundly at night. Because I know they GET it - that they are living and breathing this stuff.

I've been on the MJFF Patient Council since its founding, about 4 years ago. It started at 8 members, and has now grown to about 25-30 people. We meet on the phone throughout the year, working on various independent and some group projects; sometimes I meet with staff members when they are in the Seattle area. Twice a year we have 2-day meetings in NYC.

The staff is incredibly talented and devoted; turnover is rare; bringing fresh minds in to steer new projects is common. There is no stagnation. CEO Todd Sherer told me that it is their job to be steps ahead of the current research; to never be playing catch up.

Over the years I've been introduced to Michael J Fox a few times at fundraisers or scientific meetings. Just quick exchanges of greetings. He had never been to one of our meetings until last October, when he surprisingly joined us during an afternoon session. What he said to us was even more surprising, at least for me. He told us to be "disruptive and annoying" as we pushed for a cure. And it took those words coming out of his mouth in a roomful of patients to finally make me understand that he is truly one of us - just way more famous and wealthy. He built an organization that anyone of us would have, given the same resources (his greatest, I believe, is access - to anyone). MJFF has disrupted the way medical research is done. And Michael expects nothing less from all of us. So we must keep questioning and pushing the envelope - especially to keep MJFF on their toes.

But we have to do it in an educated and knowledgeable way. MJFF is covering a lot of the bases; they should be pushed to explain gaps. But they also should be given credit for the work they are doing so well on our behalf. Again, we are lucky to have them on our side. He really is not too good to be true.

[slapdasch2]

Originally Posted by indigogo

I don't mean to sound like I'm trying to stifle dissent when I cheer-lead for MJFF. That should never happen to us; we should always be looking in unlit corners and questioning EVERYTHING - and I applaud slapdasch for that.

But I also cannot fail to try to let people know what a comprehensive job MJFF is doing for us, and that it makes me sleep soundly at night. Because I know they GET it - that they are living and breathing this stuff.

I've been on the MJFF Patient Council since its founding, about 4 years ago. It started at 8 members, and has now grown to about 25-30 people. We meet on the phone throughout the year, working on various independent and some group projects; sometimes I meet with staff members when they are in the Seattle area. Twice a year we have 2-day meetings in NYC.

The staff is incredibly talented and devoted; turnover is rare; bringing fresh minds in to steer new projects is common. There is no stagnation. CEO Todd Sherer told me that it is their job to be steps ahead of the current research; to never be playing catch up.

Over the years I've been introduced to Michael J Fox a few times at fundraisers or scientific meetings. Just quick exchanges of greetings. He had never been to one of our meetings until last October, when he surprisingly joined us during an afternoon session. What he said to us was even more surprising, at least for me. He told us to be "disruptive and annoying" as we pushed for a cure. And it took those words coming out of his mouth in a roomful of patients to finally make me understand that he is truly one of us - just way more famous and wealthy. He built an organization that anyone of us would have, given the same resources (his greatest, I believe, is access - to anyone). MJFF has disrupted the way medical research is done. And Michael expects nothing less from all of us. So we must keep questioning and pushing the envelope - especially to keep MJFF on their toes.

But we have to do it in an educated and knowledgeable way. MJFF is covering a lot of the bases; they should be pushed to explain gaps. But they also should be given credit for the work they are doing so well on our behalf. Again, we are lucky to have them on our side. He really is not too good to be true.

You'll get no argument from me about the Michael J. Fox Foundation. I am aware of the scope and quality of the work they do and support their efforts wholeheartedly. Nonetheless, as you pointed out, their general excellence doesn't place them in a realm beyond crirticism. One issue touched on in my original post was the business of a new push by drug companies into research concerning PD and cognitive decline. This new venture is centered once more around the development of new pills to deal with the issue. The MJFF was cited as being an enthusiastic supporter of this new research, which I don't resally fault them for. Nonetheless, my argument in relation to PD research is that the playing field should be leveled a bit, with less emphasis on invasive treatments, like new pills and DBS, particularly as automatic first choices. The flip side here is a heightened sense of research interest in topics such as exercise, diet and sleep. Again, I don't say these alternatives to pushing pills aren't being addressed, but advocacy groups can do better at drawing the distinctions among these various research approaches.

[indigogo]

slapdasch - I agree with you about expanding the scope of research. I don't believe that everything that could be good for us comes in pill form.

The longer I am around the research, the more I don't believe in a one-stop cure. For one thing, we don't even know what PD is (another brazen shout out to MJFF for funding the PPMI biomarkers study, the data from which will put us closer to an understanding). And I am wary of MJFF's ties to Pharma - but that's where the money is.

Sometimes I think the wrong thing is pushing the research - money. We need a lot of it to develop drugs. It's hard for organizations to raise money around better wellness, care, and symptom relief. The system is definitely f***ed up. MJFF has been innovative in their approach, but it has its limitations.

Our problem lies less with those who research on our behalf than with the system within which they work (including the clinical trials system). It's going to take a lot of work to make the necessary changes. And it's way bigger than just PD.

Here's a Forbes article about how patient groups are changing biotech:

http://www.forbes.com/sites/matthewh...nging-biotech/

[johnt]

What do we do if we think some research priorities are wrong?

Advocacy is one route: attempt to change the system or, at least, the targets of the system. My thanks go to anyone who goes down that route.

But, there is another route: we do the missing research ourselves.

We have the skills. At the moment of diagnosis we don't suddenly lose our skills as tool makers, doctors, chemists, engineers, managers, lawyers, mathematicians, computer programmers etc..

We have the time to learn new skills. We're likely to have PD longer than most researchers spend on PD, so we may not be experts at the beginning, but we should be after a few years.

We have some of the technology. In particular, we have computing power.

We have 24/7 access to data, ourselves.

We have the motivation to find improvements.

We have obvious targets: exercise, curcumin, placebo, etc..

Just image what 10,000 citizen scientists could do.

John

[soccertese]

you don't have to make the effort to respond to newbies but you do and i for one appreciate it, i certainly could do more to help the pd cause.

[I_Got_it_2]

Originally Posted by johnt

But, there is another route: we do the missing research ourselves. John

Nice idea you've raised before. Count me in. Where do we go from here?

Jim

[I_Got_it_2]

[QUOTE=soccertese;1009862]you don't have to make the effort to respond to newbies:QUOTE]

Welcome NEWBIE slapdasch2! GOOD POST!

nEWBIE jIM