[paula_w]

Press release - moderators can press releases be copied in full?
Parkinson's in the news.
May 14, 2008
23andMe and The Parkinson's Institute Announce Initiative to Advance Parkinson's Disease Research

23andMe, a privately-held personal genetics company, and The Parkinson's Institute and Clinical Center (“Parkinson’s Institute”) today announced a research initiative under which Parkinson’s Institute patients, with financial support from The Michael J. Fox Foundation, will enroll in the 23andMe Personal Genome Service™ to support the development of advanced methods for clinical and epidemiologic research for Parkinson’s disease.

For complete article:


http://michaeljfox.org/newsEvents_pa...cle.cfm?ID=345



added by Curious: if you are unable to pull up the article, please pm me and i will copy it for you.

[PDengineer]

This is huge! And just might be the kick start to improved treaments.
I expect to see more news on this soon.

[reverett123]

no telling what will fall out of that tree

[myparkinsons]

It's amazing the way technology is heading, I look forward to more developments like this. There is a lot of power in a community that looks our for each other.

[indigogo]

This is very exciting! Fox is doing the right thing by tapping directly into patients; Bill Langston, as always, is way ahead of the curve.

Thanks for bringing this to our attention, Paula!

[Fiona]

I'm liking this one, too. I just read this amazing book about how to maximize the web for business development. The only thing is, then we have to apply it and use it in real life.

For example, yesterday a fellow patient of my doctor's marched into his office waving the patent abstract about mucuna I found last week on the web. He read it with absolute fascination and excitement, obviously not having heard this info before. Now this doctor is a major PD research guy, and DEFINITELY goes to the same cocktail parties as the patent applicant doc. But didn't really know about it before?? My point is there is a lot of info out there, and it's great to think of ways to use it, maximize it, and I never would have gotten to it if I had to go to a dusty patent office and browse through a few tomes there - but then everyone has to talk to their fellow patients, their colleagues at cocktail parties and so forth,so we can make sense of it and use it. But sounds like this system has that in mind, too. Nice.

[lurkingforacure]

Your doc may not have known about the mucuna patent because normally, mum is the word until the patent is filed and even then, still mum is the word until the patent is granted (or denied). No one would dare discuss something like this at a cocktail party, given the highly competitive climate out there for things that might actually WORK! It is all too easy to steal someone's idea, especially regarding something that has been around as long as mucuna, and has as much history usage behind it.

[Fiona]

Originally Posted by lurkingforacure

Your doc may not have known about the mucuna patent because normally, mum is the word until the patent is filed and even then, still mum is the word until the patent is granted (or denied). No one would dare discuss something like this at a cocktail party, given the highly competitive climate out there for things that might actually WORK! It is all too easy to steal someone's idea, especially regarding something that has been around as long as mucuna, and has as much history usage behind it.

Good points all. And I don't mean to derail this thread, but since patents are info related - well, it's exactly the kind of thing that a mega-web-driven base of information could reveal, things that normally are hush-hush - but hello? A patent application is public information. So the internet does make it a whole new ballgame in so many ways - now patients are empowered to find out all kinds of stuff, and go demanding that their doctors get caught up, and Rules Could Change. Whoah. I'm liking this even more now.

However, I was trying to cast the long shadow of irony with the cocktail party remark. My point being that if there's something out there that's incredible that is working, and you're not sharing it with your peers, that's weird because we're talking about an area where patients are living and dying because of the kind info they're getting...how could one keep it to themselves?

I guess I still see some kind of ethical separation of Medicine and Business as essential to the collective health.

I guess I wasn't made for these times. But considering this same doctor who has the patent application (and we'll charitably assume it's for the best motive so that no one else will pounce on mucuna and ruin it) also helped 'invent' Zandopa, and we can get that here, but my big research guy didn't even really know about that either....I'm left scratching my head a little. I hope a big internet info thing will help, but if people aren't doing the math and reaching out for or are willing to help disseminate and implement info, then our task of curing ourselves and each other will be a lot harder....

[Howardh]

As I went through my drama of a month ago I often wondered at the lack of knowledge regarding Parkinsons by medical people. In my 12 years with the disease (9 medicated) there has been no in depth analogy by neurologists or GPs. One senior specialist mentioned just before I was released that there were no detailed kept records on my PD for them to review. It seems after the dx, it's.... take the pills with orange juice x times per day and I'll see you next year.

This Michael J Fox report is fantastic, and not before time. For me the crucial stuff I will be bitchy about, (if that word is too strong we can exchange it for disapointed) no audited report on my condition has ever been done. And it appears the U.S. has the same stagnant system. No wonder little progress has developed since Sinemet deployment more than 40 years ago. Thanks for posting. I still cannot get [eurl]www.michaeljfox.org[/url] on the web. Your posting of full text is invaluable. I have more puter drs arriving next week to disect and rebuild.

For me these are the standout points....................

All participating Parkinson’s Institute patients will be enrolled in the 23andMe Personal Genome Service™ and will provide a saliva sample for a comprehensive genome scan generating more than 580,000 data points per patient.

--Parkinson’s Institute patients will provide specific information and insights that will include their individual environmental exposures, family history, disease progression and treatment response.

--Patients’ risk factor and clinical data collected through the newly developed and validated web-based tools will then be merged with their genetic data to conduct research on Parkinson’s disease.

--New surveys will be developed and administered to the growing cohort of patients, generating new risk factor and clinical data for comparison with the existing genetic data.

This has got to be a quantum leap forward. All this in a week that saw Neurologix www.neurologix.net announce their recruitment plan for patients to assist in the Nurologix phase 11 Parkinson's trials happening in the second quarter or business.

[Curious]

i am sorry, but the whole mjf site is copyrighted. it's at the bottom of the page. left side on his site.

howard, i can copy and pm you any article you would like. just point me to posts with the links.

the articles can be emailed or pm'ed, but they can't be posted here. sorry.