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

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

Thanks because your words are beautiful ones, the ones of a citizen of the world, aware of needs,
and of the tiny but important role WE MUST play when none will do it for us the way it has to be.

One step, another, one by one, maybe we won't walk the whole way but it will make the difference.

Medicine 2.0 is walking nearby, along a new way too.
In next generation of medicine management, diagnosis and treatment of diseases will be based on the spirit of collaboration
and sharing of patient related knowledge.
As soon as in three to five years, differences will already important ones.

Because scientists and even more physicians are aware of the changes internet phenomenon induces upon their relations to patients, they adapt to the fact we get informations from all the world and we'll share will them,
make it a tool of well-being and why not, a tremendous problem to defrauders

These professionals must too get out of their trap, as their patients will escape more and more .
Otherwise, where will they find legitimacy?

We have been and are still pioneers of this new situation between patients and professionals, a huge chance .

We must get out of our trap asap and absolutely consider Medicine 2.0 emergence and understand why it is now we have to do it.
We have not the right to delay or to miss it because we will have to do it and slower than others.

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
Absolutely and again this is our luck, Internet allows us to participate even when disabled.
There is no money to earn or spend , no marketing here, effort and committment and pride for advances to come and to have looked for

Who? The BEST TEAM, YOU and US
What? To RESPECT our RIGHTS is our first DUTY
To DEFEND them as an essential KEY to find a CURE
When? NOW for it’s TIME
Where? Anywhere TOGETHER
Why? Have PRIDE rhyme with PD

A great post, Lindy,
very happy to same ideas and motivation with you.

Anne

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And I thank you both - you have the same spirit and intention - this is a good time for building. Thanks for the recommendation Lindy, and for offering to help - I hope to see you on a conference call. Carey is at the Democratic National convention but I will see her after that. Anne, we NEED you!!

best to you both and keep the inspiration and information coming please...
paula