[paula_w]

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

[dbiker2]

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.

[pegleg]

Originally Posted by dbiker2

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

[paula_w]

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]

[paula_w]

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

[lindylanka]

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

[Debi Brooks]

Originally Posted by lindylanka

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

Just a reminder...

Any PWP is invited to participate and the MJFF and Parkinson Institute outreach efforts were just the first wave. But the MJFF site will continue to be a conduit for getting involved. As folks sign up on our site, the requests are batched and then forwarded to 23andMe. So, you should hear from them within a week or so of signing up via the MJFF site. But, there will be additional opportunities to get a discount code in the coming weeks. Folks from 23andme will be in the MJFF booth at the Unity Walk. I think that NPF will be reaching out to others through their support group network. 23andMe is working with a few big MD clinics directly. So, additional efforts are underway to reach folks that aren't online and aren't in the know.

Thousands have signed up and spit is rolling in (hee hee) but thousands more are needed.

Thanks to everyone who has decided to participate.

Best, Debi

[lurkingforacure]

It is not clear to us which, exactly, genes are being tested in the 23andme 10,000 sign-up deal. What I have read so far has indicated that they may only be testing for one, tiny mutation, while there are MANY that have been implicated in PD. IF so, that would explain why more people have not signed up. If you are going to get sequenced, might as well be for all the known and suspected rogue genes. We signed up on MJF's site last week, and are waiting for the next step.

Anybody know about this? Thanks.

[Curious]

Originally Posted by paula_w

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

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.

[paula_w]

i will be in touch with 23 and me this week and will ask them and also try to get it in the video.

once again, i wasn't clear and it's my own fault. i know nothing about people not signing up....i have heard the opposite. but with so many people offline, a video would be a great way to introduce the study at support groups followed by having them sign up. all one needs to do is take a personal computer to the meeting. They would still need to purchase online, so maybe they could practice at the meeting how to do it.

this is just one idea. but if they never know about it, they won't have a chance to participate.

maybe we aren't getting a full analysis. But we are initiating a new kind of research, and that's why I'm behind it. I've watched treatment after treatment fail for various reasons, and data collection makes sense to me. It 's an attempt to do it "Andy Grove" style, when you see something not working, modify it, etc. and with the large sample - well who knows what might show up?

i'm not going to try to talk anyone into having the analysis, i'm just trying to get those who are getting the analysis to take a few pictures! i am trying to make a good quality video to inform people so that they can know about it and make their own decisions.

this thread is leaning toward mixing apples with oranges, or maybe oranges with tangerines. sorry it wasn't clear.

thanks and curious i'll post there after i talk to 23 and me and maybe know more. lurking for a cure, can you post what or where your read that? tell us any more about it?

thank you all,
paula

lindylanka - please send me your email in a pm? i'm glad to see you and i do have things you can do!! thanks..