[paula_w]

AT attention even if there are only a few of us!

The problem with google wives 23 and me company is that we are asked to pay one thousand dollars to get DNA testing and they will mine it and sell it in databases. The average pwp cannot do this, but here we are, ready to help in anyway possible with an offer to help by Doc John. I wrote to Fox Foundation [not Michael personally] and asked for ideas - it's the first time the foundation didn't respond to me, which tells me that's more than they want to handle and I can understand that. I wrote it casually, but if you hear from Brin, that could start a big ball rolling. I can't afford to save rich executives from getting pD with a thousand dollar test but I'll do what I can. They need to invest in US.

Thanks bandido I'm reporting for duty.....
paula

[Curious]

i'm here ready to help in anyway i can. just don't ask me for a thousand bucks.

[olsen]

and what about appealing to Andy Grove?

[RLSmi]

I'm ready to help in any way I can, just let me know.

My wife, who is actually the computer guru in our family, is starting a family blog called Odds Against Parkinson's. Its purpose is to inform all of the people in my family of the evidence that PD is lurking in our genes, and to share everything we know about possible ways to stave off its progression to the clinical stage in apparently unaffected members who may be at risk.

My late brother and I have both been tested for the PROGENI project, but I do not know whether or not we have one of the already identified genes, such as LKKR2. The tricky thing about that particular gene is that, although considered a dominant gene, the "penetration" or frequency of development of actual symptomatic PD is only 30-50%. Also, with that gene, the clinical picture is like that of "sporadic" or "idiopathic" disease, in that carriers usually develop clinical symptoms at later ages, but they may also begin at younger ages.

I hope we can get a beneficial process of patient-generated data sharing going.

Robert

[Shake 'Em Up]

Such a great move - the founder of the most comprehensive web search browser recruited to create an international web instument for pd research... sounds like a match. Can shift a paper dream into the reality category. If another voice can help, I'm in...

As an aside: What happened to the PD registry started by the Ali Center?
Cyndy

[QUOTE=bandido1;378356]Bandido is standing by. While waiting I am attempting to make contact with Sergey Brin, co-founder of Google whose mom has PD.

[paula_w]

Cyndy,
oops I edited at the end - missed part of bandido's post.


You probably know this - so sorry if it's a repeat -but google's co-founder Brin, has the LRRK2 gene mutation in his family, including himself,which gives him a fairly high chance [see RLSMi's post] of getting it himself. One can't help but wonder if that's why the wives of google co-founders started their company 23 and me to collect DNA and see what they can find out from electronic records of all the DNA. It could lead to subtype identification, as practically no one believes that pD is one disease anymore. I don't know about why they started the company, just speculating. It could save Brin.

I would love it if someone would tell us what they are looking for, so that we choose data to collect here at neurotalk that is needed and can be used.

edited to add another idea: make a promotion video for 23 and me, patients only, and get free DNA tests [$1000] to add to the database from 23 and me.

i see now after rereading that you meant bandido would recruit him..sorry!

paula

[Shake 'Em Up]

Paula-

Thanks for the direct response. I knew about Brin and the LRRK2 gene, but not about company 23. Can you tell me more?

Also, what is the protocol to responding to threads? Am I supposed to indicate or make reference to the thread to which I am responding, or am I supposed to include the entire text? Do I direct my response in general or to the next in line?
Cyndy

Originally Posted by paula_w

Cyndy,
oops I edited at the end - missed part of bandido's post.


You probably know this - so sorry if it's a repeat -but google's co-founder Brin, has the LRRK2 gene mutation in his family, including himself,which gives him a fairly high chance [see RLSMi's post] of getting it himself. One can't help but wonder if that's why the wives of google co-founders started their company 23 and me to collect DNA and see what they can find out from electronic records of all the DNA. It could lead to subtype identification, as practically no one believes that pD is one disease anymore. I don't know about why they started the company, just speculating. It could save Brin.

I would love it if someone would tell us what they are looking for, so that we choose data to collect here at neurotalk that is needed and can be used.

edited to add another idea: make a promotion video for 23 and me, patients only, and get free DNA tests [$1000] to add to the database from 23 and me.

i see now after rereading that you meant bandido would recruit him..sorry!

paula

[paula_w]

Hi Cyndy,

You can reply either way. For this reply, I hit the post reply to the left under the box of your post and just addressed it to you, without copying your post again.

If I would have hit the reply that is in the lower right in your post, your post would have been copied below in my post- obviously responding to you directly. Hope that made sense.

Here's more on the 23 and me company.
https://www.23andme.com/

Here's sergey brin post in the spittoon blog, scroll down a little: http://spittoon.23andme.com/

google search: http://www.google.com/search?hl=en&q...2&oq=23+and+me

paula

[Perryc]

Paula and others,

As I had indicated in the earlier versions of this thread, I am seriously pursuing the patient developed data base as an output of personal health record record software and will be integrated with companion software for specialty Parkinson's care. The physician software has been used for 5 + years and as you know I have been seeking a grant from the Cisco Foundation to support the technical work. I have also begun to work with the Critical Path Institute on the demonstration of analytic tools and sharing data among large PhRMA companies to share data and collaborate on development of analytic tools to enhance the drug development process. Patient defined data bases created will help provide the information to develop these tools. The idea here is to establish PWP work groups to specify the appropriate data and the capabilities of the system to help each of us take a more active role in their own care. I am seeking names of PWP interested in participating in this effort. Contact me if you are interested.

Perry

[bandido1]

It has been a month since I submitted my “old timers” commentary suggesting several KISS approaches to this multi-faceted thread. To recap it appears the overall objective has been to unite the orgs. Within that objective paula-w suggests three avenues: - Advocacy, Data Collection and Marketing. Perryc advises he is “seriously pursuing the patient developed database” and invites interested PWP ers to advise him (presumably through this forum. Meanwhile as to the Advocacy/Marketing approaches, several “go for its” have been posted and additional approaches have been suggested including a promotional video,and an international website promoting PD research. I took a shotgun approach thru Sergey Brin’s personal website. It was, as is my style, a softball pitch designed to peak his interest. Not surprisingly I have had no response from this busy young billionaire who promises he will at least acknowledge his mail. My curve/slider is intended to get him interested in the promotional video approach.
Since the earlier post I have been reviewing the ties Sergey has to “23and Me”and the MJF Foundation. His spouse is co-founder of the former and her co. has received a grant from MJF. In addition Sergey has ties with The Parkinson’s Institute. A $600,000 grant from MJF Foundation will be used to fund a study of a control group of PD patients who will presumably use home computers to input data to (no surprise) 23and Me. I believe Perryc & others are aware of databases already developed in other forums including an extensive one sponsored by a for profit company under the PatientsLikeMe.com forum. Duplication of efforts? I don’t know but I suggest it should be checked out. If The Parkinson’s Institute, MJ Fox Foundation and 23andME are already in an alliance does it not make sense to explore ties with them? That is I believe what this thread is all about.