Stephen,

Welcome to the forum. What a great talk! Thank you.

If you look through the threads, you'll find a huge number of reports of what it's like to have Parkinson's and descriptions of our efforts to improve our condition.

Our members include people with a wide range of skills. Collectively, we could, in my opinion, make a substantial contribution to PD research.

We've been looking at ways to leverage our often anecdotal evidence by putting it into a more communicatable format. We've also discussed running small-scale clinical trials on "safe" substances, such as curcumin.

You write:

There would certainly be some interest here.

Please give us more details.

John

ST, sorry to hear about this, it is not my experience at all. No doubt there are vets out there like this but I've not run into any...my vet is very conservative and conscious of cost and I guess I am very lucky.

And I've already read that lawyers aretrying to get lawsuit damages beyond the value of the animal approved...and when that happens, costs will skyrocket.

And no, I wasn't REALLY going to take my kid to the vet, but I did throw it out there to see what she thought...and honestly, even with insurance covering our visit to the doctor, the vet would have been a cheaper option. And they probably would have given her a bath and trimmed her toenails while she was there

Dr. Friend,

Thank your for reaching out to us! It is so nice to know that there are scientists who have the courage of their convictions; I cannot imagine it easy to speak what you believe so openly, especially when many others around you see little need to change.

This is the first of a few questions I want to ask; it's not often we have researchers joining us, so I am taking full advantage.

As I listened to your talk I could not help but think of the Aaron Swartz tragedy; I see him as one of our unsung heroes. In my mind, his trial is an example of one of the major impediments to translational and patient led research that is the corporate ownership and control of information by academia, publishers, and database services. The case involving JSTOR, MIT, and Swartz are a prime example of what we are up against when trying to participate in our own care. It is ludicrous that patients hit paywalls having to pay for what is 'often publicly funded research. Is MIT's decision to go on with the prosecution an example of corruption of denial? Where do you see the role of information control in your vision for a better research process?

Finally, I wanted to add that the professional associations of our doctors can work against us; especially with PD which has a fairly high misdiagnosis rate. With us, the American Academy of Neurology sets forth guidelines on diagnosis and treatment; they can end up becoming rules or dogma written more for doctor benefit than patient. There are so many competing interests. It feels like David has to conquer more than one Goliath to make this happen.

Laura

The kaggle contest mentioned in previous posts has now finished, and a winner has been announced (see below).

Over 600 people downloaded the Parkinson's data.

In my view this has been a great success.

MJFF are to be congratulated.

http://www.reuters.com/article/2013/...e0+PRN20130424

John