In response to Paula's question re email database, more in-depth database and publicity campaigh - and after waiting for a resounding silence to settle, I have decided to stick my neck out for the following reasons:

1. Because I believe in the capacity of a collective PWP voice to generate change.

2. Because it will take a long time for the orgs to agree to have a united voice (after all they have had plenty of time already). And this doens't mean I think they won't - they simply don't have the sense of personal urgency that PWPs have.

3. Because all the time we read of more people with this disease, and more young people too, and we need to get the ball rolling not just for us, but for all the people who may benefit in the long term.

4. Because I believe that within the PD community we have the skills, and the ability to make the right connections, and small contributions of time, skills, knowlege, and commitment from many people can bring the vision of some of the key people on this board to fruition.

5. Because I KNOW that with this kind of venture it is effort and commitment that count, that for once it is not all about money, and it is all possible. (Read the docunebt (white paper?) that Paula recommends)

So here goes......... Paula, I am uncertain of exactly what you are asking so I am going at this in terms of personal commitment and skills. I think that possibly you are also calling for ideas on more formal resources, which not being in the US I would not presume to volunteer ideas on.. IF this is not what you are asking please feel free to knock me back

WHO
Linda Ashford, former digital artist working in the field of disability rights and empowerment. Atypical Parkie, with a familial brand of PD.

WHAT
Skills in video production, web design, graphic design, project splaabnig (sorry!) planning (all subject to PD brain), bit of a geek, prepared to do anything needed, not too proud to do donkey work! Time, subject only to PD failings....

WHEN
As from anytime now. Would like to help move things on so that there is something visible and achievable for Glasgow 2010. To have an international patient voice that is focused with many signatories by then would be fantastic. As soon as everyone is back from their holidays, work etc, and Dr John is able to discuss this further with Carey, Paula, and others.

WHERE
Living in UK but used to collaborating online on a variety of project types. Am happy to contribuite on a local or international level, whatever is needed....

WHY
Because I believe that this is significant enough a venture, even if I do not ever benefit from it. Because it often feels as though normality is just a whisker away, if only someone, something, could make it happen. Because there are so many who need to benefit soon. Because I do not think hope is a dirty word, or that it should be left in the hands of profiteers.....

Any other takers

Lindy