Vicky sent a lovely picture for the SPIT video and she had immediately made a video that it looks like technically we can't use. Thank you Vicky. For a while, we weren't hearing from 23 and me and thought they might not like the ideas , etc. i almost gave up, but someone intervened and they are back and ready!

so now it's just the patients who are not contributing to this effort. i'm just being honest.

Debi set it up in the first place so MJFF has done their part. 23 and me is doing their part - lizzie had the flu. We can use old pictures flashed in videos for years, or we can make this innovative and the best it can be. We are no longer calling for videos. iF you don't want to be genetically analyzed you can still send a picture. You won't be identified, we have scenes where faces are needed to fade in and out, stuff like that. if you are spitting, just take a few pics of it....we have removed the make it funny request.

if you aren't participating, do you have the right reason behind the decision? please think about it very seriously. if it's apathy, or i'll do this tomorrow, tomorrow has arrived. we asked for different kinds of research, we have someone ready to take it on and pay for it.

now it is up to you - consider the goal - this is business, org and patient collaboration .......try to force yourself to do this....i can procrastinate forever and i do understand. but it weakens future complaints about not listening to patients.

i just want to mention too, that the genetic analysis is just the first part of this study. Critical to its long term success are the online surveys that we will be filling out. The research is conducted entirely online. It's bound to include alternative meds and treatment questions at some point....may already have ..this study does not separate the chemical from the psyche or behaviors.....

Mjff has two top priorities according to katie hood's panel discussion at PAN:

cognition
dyskinesia

they are the conditions that make us quit our jobs.

the ball is in your court and this video is going to bring people in...the better it is,,,,the farther it might go to help.

Send pics of spitting or pwp with families if you like to spit4pd@gmail.com

thanks for considering,
paula

it cant get much easier than this to participate in a PD study all you have to do is spit......all the supplies are delivered to you......open it up... spit in the tube provided.......place it in the Fed-ex bag that is provided (already paid for) and send it off. WOW.....I was worried about all the slots filling up....I thought people would jump on this.

Hi DB!

Don't forget that you MUST register online before you spit! Completition of surveys is also an integral part of this research. If you want to see some funny photos, you've got to see mine!

Peg

we have no pride - as they said on oprah - vanity is the first to go. Besides, how do you make a picture of spitting gracefully?

paula


quote=pegleg;491405]Hi DB!

Don't forget that you MUST register online before you spit! Completition of surveys is also an integral part of this research. If you want to see some funny photos, you've got to see mine!

Peg[/quote]

The spit kits might be selling like gangbusters. I don't know maybe debi will tell us. i was talking about making the video.. The majority of pwp aren't online, i would think. this is something support groups could do for those offline..lots of work to do. The surveys are a large part of the research.

ok thanks for letting me make a delicate point- i'm done -you get it.

thank you.
paula

Hi Paula,
Would have been happy to participate, but have not had any info from signup last month. Signed up again using same MJFF page and still nothing. Perhaps this is not for the rest of the world?? Even with the dropdown menu that sort of gives you hope that it would be...... I am not however criticising or being negative on this, getting the 10.000 in itself will be great, a big first, and you know my views on the rest of the world thing anyway, I just want ROTW to be at the table too............... for many good reasons...... you asked for reasons for not participating - that's mine, on the other hand perhaps there is a role for those who are not otherwise able to SPIT!

Best wishes with all endeavours, if there is anything I can do to help please PM

Lindy

Paula, it needs to get posted on the Community Forums Feedback and also on the Social chat forum.

Many of our members have family and friends with PD, but since they don't, they don't check the PD forum.

It's another avenue to get the word out.

As you stated, the majority of PWP are not online. I can tell you, none of my husbands clients with PD get on message boards, most don't own a computer.