[paula_w]

Because I know that readers come and go and may not be caught up, I'm posting what I wrote in Facebook and hopefully it will make sense to those who missed it. I am behind this research completely; we don't know the answers or why would they do it? The success for this one however, depends upon us. This is not the time for apathy - this study couldn't be more user friendly. We can build an "inside" community as big and busy as our outside one - all online. I'm not doing so well on the outside. I want to know what makes our inside tick, or sick...well both. There is a guy, even if he is a billionaire and has it better off than we do, who just might get this wretched disease. I wouldn't wish it on a trillionaire. He is trying something innovative and that makes sense. Soapbox put away. Here's my facebook summary. Hope it's useful.

oh and I've spoken with the 23 and me contact, we are talking tomorrow. She is really excited about the video. Thanks again to Debi!

Hi all,

I'm Paula Wittekind and I know many of you in the pd community. I've spent much of my time looking at research and clinical trial progress and it wasn't true that there would be a cure in 5 years. The more they discover, the harder it gets. So I'm thinking that giving this new approach being offered a little spit is worth the effort.

I first read about Sergey Brin [co-founder of Google] having the mutated gene that increases his chances of getting Parkinson's several months ago. His wife and a partner started a company called 23 and ME, which tests DNA for many different conditions and reasons. At the time I first read of them initiating studies in the PD community, the kit to test for the DNA was priced at $1.000.

It has gone down in just a few months to $399, but is still steep for many. Sergey Brin, whose mother has PD as it's familial in his case, has awarded a grant to 23 and Me to give discount coupons for testing. The coupons are available right now and with one the test can be done for just $25. This is an incredible discount, available by signing up on the Michael J. Fox Foundation site.

The Brins are doing this because they want to get it right. They are searching for biomarkers, treatment targets and any new connections and can only be more accurate with high numbers of pwp spit. They want 10,000 samples. Surveys will follow to collect more information. They are not producing a treatment, but are gathering data in mass quantity that will hopefully yield new discoveries that will speed treatment development along.

We [pd patients from no particular group - just those who want to help] are making a You Tube video about this called SPIT to Stop Parkinson's In Time. And it's all about time. Time is not neutral for those of us with PD. But after this study, it also may not be neutral for those who are likely to get it, based on what they find. It becomes urgent to stop it in time for all, meaning new treatments or more.

Another aspect of time I can explain in two words. Baby Boomers.

Instructions of what to do are coming below but I wanted to make sure the background information is complete without being too too wordy. Significant and not to be ignored is the personal decision to know whether you are susceptible for an illness. This spit kit that you will receive in the mail from 23 and Me will test for 105 conditions. This requires some thought.

Here's what to do:
1. sign up for the coupon at the Michael J. Fox Foundation - you are then on a waiting list
http://michaeljfox.org/new
cle.cfm?ID=303

2. a coupon with a code and instructions will arrive via email

3. go to the 23 and Me site and provide the code to purchase the spit kit at the discount price of $25.
https://www.23andme.com/

4. when kit arrives, consider videotaping your filling the container for our You Tube video. Please email me for further instructions. We welcome pd humor like hit and miss, dry mouth, etc. but would not actually want to see the..well spit. We also have other roles to fill for the video.
spit4pd@gmail.com

5. send your sample back to 23 and Me.

6. the results will be sent to you.

Think about it. It seems that current research methods are not working like we hoped and needed. This new approach is a first, and one worth trying.

thanks all,
Paula

[bandido1]

Paula: Outstanding Post: I hope we get 9000 hits. If I can maintain some creativity between my "off times" I am thinking about doing a video with an old codger belting out a rap version of some yet to be selected ditty. Will it survive your cutting room? Bob C

[paula_w]

Originally Posted by bandido1

Paula: Outstanding Post: I hope we get 9000 hits. If I can maintain some creativity between my "off times" I am thinking about doing a video with an old codger belting out a rap version of some yet to be selected ditty. Will it survive your cutting room? Bob C

Anything and everything is on the table Bob! Have you written it? If so can you send it to spit4pd@gmail.com? We don't want to give too much of our sophisticated plot away....lol. Should know a lot more after speaking with 23 and me. i will definitely update in the project forum.

glad you are back in action,
paula

[bandido1]

Paula: "off" again today but got my kit. I made need some tech support to get my yet to be created video to you. It will be "G" rated.

Will my webcam and Logitech headphone/mic do the job? Bob C

[Curious]

Absolutly Off Topic...but good to see you post Bob. I was worried watching those storms and tornados pass your area last night.

[Floridagal]

Paula, The page to get the coupon won't open...is there some other way to get it? I tried just going on the MJF site but no coupon, Thanks, FG

[paula_w]

Originally Posted by Floridagal

Paula, The page to get the coupon won't open...is there some other way to get it? I tried just going on the MJF site but no coupon, Thanks, FG

http://michaeljfox.org/23andme.cfm


sorry just seeing this - it just worked this morning - did you try again?
http://michaeljfox.org/23andme.cfm

paula

[Floridagal]

Yes, thankyou, that one worked! FG