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PHILOSOPHY: guiding principles behind this web site

PwP Power

We believe that people with Parkinson's, us, can play a significant part in improving the quality of our own and others' lives through researching into the causes of the disease and its treatment, through disseminating knowledge and through translating research findings into practical treatments.

We are motivated to find solutions.

We have countless skills. These skills were not lost at the moment of our diagnosis with Parkinson's. We have expertise in everything from medicine to mathematics, from business to biochemistry, from design to data mining, from computing to chemistry.

But, most importantly, we have the advantage of living with the disease 24/7: we experience what others can only read about. We know what symptoms affect us the most: it's not just movement difficulties. And, just by going about our day to day activities, we experience ups and downs in our condition which if they can be measured, analysed and disseminated can provide the data needed to make progress.

PwP responsibility

PwP should be responsible for the management of their illness. That is not meant to mean that we turn our backs on doctors or big-pharma. We need to make use of them, but as a resource, rather than the font of all knowledge. So, rather than passively waiting for them to come up with a cure, we should join the search ourselves. This could involve taking part in official trials, but could also mean instigating and taking part in PwP led trials and in analysing the data these generate.

We need to make our own assessment as to the safety of our actions and to take responsibility for the outcome.

Open Data

All the raw data stored on this site is available to anyone to download. Moreover, the data will be stored in a way that makes it easy to use. Reason: we wish to encourage as many people as possible to analyse the data, so that we maximize the chances of something significant being found.

Open software

All the software stored on this site is available to anyone to download. Reason: we wish to encourage as many people as possible to provide data and to analyse it.

What could the impact be?

"An estimated seven to 10 million people worldwide are living with Parkinson's disease." Parkinson's Disease Foundation

Adding in family and close friends gives, perhaps, 30 million people motivated to find a cure.

Possibly 1% will help.

Possibly each will be 10% as effective as a full-time professional researcher.

That's the equivalent of an extra 30,000 full-time researchers.

How can we make it happen?

As a first, small step, show what can be done.