Paula,

How do we exchange skype addresses? Not sure of protocols here, life too short to read T's & C's and being male, instructions are not for me.

Grey

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The cause is hidden within my body, I want to expose it.

Grey,

Do you have skype downloaded? To do that you will need a user name. Once that is set-up (instructions are onscreen throughout the set up) you are ready to add contact names and invite them to be one of your contacts. Once you have established mutual contact, you can call each other over the computer free of charge. Start by going to skype.com

I do agree with Rick that a great contact if you don't already have contact with him is Tom Isaacs from England's Cure Parkinson's Trust. He has PD (diagnosed in his 20s) and has done so much for pd advocacy.

Rick also brought up a relevant idea about existing drugs. We all share your frustration at the length of time it takes to produce a new treatment, and there are existing drugs that may help us.

Everything we do is pretty much pioneering so there often is no predecessor to model from. But we envision global participation in advocacy, with someone from, say Scotland keeping up with issues in Scotland, as well as other countries contributing about their situations. We need to investigate certain issues on a global basis. So keeping informed and just sharing it is a start.

For example, i was surprised to see that patients were not allowed in the medical exhibit hall! Is that why they chose Scotland? I loved Scotland but what a convenient law for the doctors and pharmas!

This is just an invite if you are interested. Don't feel pressured or obligated, just hearing from others far away and abroad benefits us all.

Thanks!

Hi Paula

Skype- my question related to how we exchange skype names, many forums don't like us to publicise contact detail, butt here goes, I'm pdgrey (mods please accept apologies if I'm breaking rules).

I'm already in active contact with Cure Parkinson's Trust but thanks Rick.

The reason for the non-patient area was to protect us from direct sale by the big Parma. No comment! I know some rather childish pp's who penetrated it, no names mentioned but it was rather boring. Not that I'd know.

They chose Scotland because of its beauty and the friendly natives. Alas the SSEC is not in an area of outstanding beauty.

Look forward to chat.

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The cause is hidden within my body, I want to expose it.

Hi
we don't mind you sharing your personal info, but do be aware that these boards are quickly indexed by Google & the other Internet search engines

We have a field in your profile (User CP) here where you can enter your Skype ID, as well as AIM etc. Using your profile to add your personal info is also a good option for those that don't want it on Google, as the search bots cannot see profiles, BUT anyone registered here as a member, and logged in, can

Hey Paula

I would be interested in participating in this.

Bryn

Hi Bryn and Grey,

We are loosely following a plan talked about a couple years ago that is actually becoming a reality and that is global patient communication and activisim with goals The first thing we need is an email list thru which to communicate and right now you can do that at
http://parkinsonscreativecollective.org/

Please go to the contact us page [link is at the bottom]. You are not formally joining anything - it's just to maintain communication. We are very busy editing and completing the book but feel that we could come together on skype for brainstorming soon [perhaps the end of the month]. We are thinking about having representatives from as many countries as possible and can dig deeper into the reasons for things like this sinemet shortage.

We also would like to have interviews from those who are working and/or researching for pd. Video ideas are limitless. Creative advocacy is an ongoing process. A brainstorming skype call is in order so while we are editing for book copy 2 , please give some thought to how we could best use our global resources.
More to come. Thank you!

http://parkinsonscreativecollective.org/contact.html

Paula,

At Congress, we met a very pleasant lady from Philadelphia, Katherine, who is a member of your team! We met whilst resting at the Cure Parkinson’s Trust stand and Katherine showed us the book you are working on.

I'm having problems with your contact page but fortunately Katherine and I exchanged email addresses so I have sent her an email and asked her to forward copy to yourself.

Contact at last!

Best wishes,
Grey.

Hi Grey,
Did you fill in all the fields, even though two are optional the code seems to be erratic, you do not have to leave your phone number, just put in any single numeral, any character into the message field, that way you will be added to the mailing list. Apologies for nay hassle.....

Lindy

We can We are We will.Paula were already moving this forward,its championing,all that is PD from the patient perspective.Patient engagement was a much used term by many speakers of all representive groups patient and professional.How ? I feel strongly that it is up to us,local national global one and all.Lets do it now today,time is to precious to waste I live well with PD,I want the same and more for all,we need to engage a truley global PWP citizenship.

You all do think like we do. We are trying to finish the book so may i ask emails to communicate in that form until we are more freed up which is what we are aiming for ....to use the site to continue; then we want to set up a useful interactive site of just advocacy. Anyone else have ideas on how to get started quickly?