This article from the Economist predates the launch of the 23andMe PD community effort but I think it is very interesting so I thought I'd share...


http://www.economist.com/science/tq/...ry_id=12673407


Debi

PS...the deadline for activating your coupon is being extended to Wednesday, March 25th (an email reminder/update is going out today) and there will be an ongoing opportunity for PD patients who didn't receive the original email/coupons from us to sign-up on the MJFF site.

SPIT:
the next best thing to autopsy?
can it Stop Parkinson's In Time?

Thank you Debi. Kathleen, I hope this answers your questions! I have to wait for 10,000 people to answer mine!

Always willing to do my part....paula


Editing to add:
Well i guess that hour of the day wasn't too perky? I'll remove tomorrow, a little dark..sorry.[/QUOTE]

Paula: Whose time did you have in mind? Bob C

I'm really glad you asked that bob. It's kind of the whole point to me.

If DNA testing proves to identify biomarkers and targets for therapy, and if they start seeing that people with these biomarkers do or did indeed develop parkinson's, then it becomes urgent to prevent it or treat it for all of the people who are identified at risk. it becomes urgent to stop it in time for these people who have the markers to get it, just as it is urgent for us at the other end. stop it means a treatment, but a vaccine would be wonderful.

it's always been urgent for those who are older and more advanced. we've been emphasizing urgency and trying to not look desperate for some time now. But this testing will make it important for those who are at risk as well before they get it, or to have a treatment if they do. thus in time for them also. I think i just repeated the first paragraph.

Sergey is a blessing to the PD community. He is young, not worried, and wants to help- his mother I believe has it and he has the gene. Debi please correct my facts if in error. He isn't worried now and may not get it, but we know what the suffering is like at the other end. i wasn't always that worried at the beginning either, listening to them all say cure in five years. you simply can't spend your life worrying.

Unfortunately, it takes over eventually - this is a wretched illness and this study is an effort to mass identify ---we can't go on clinical trial by clinical trial and have the placebo effect blow the whole thing. Can DNA stop this in time to get a treatment thru the pipeline for people newly diagnosed or pre diagnosed?

I'm not counting on anything in time for me.....but I don't want them to stop trying! Something might emerge. I feel 80 but am not 60 yet...I'm in a different place than Sergey or Michael and try to stay positive-- but i can't deny it's getting difficult. i'm rigid dominant and i think it might be harder, but in all honesty, i think it's l-dopa that is making me so bad.

One thing i know works for Michael and now we hear Sergey as well even thohe is only at slight risk is being goofy. I call for more goofy here all the time but this forum is full of smart brains who are the nicest, knowledgeable and understanding people I know...but not goofy. Maybe just shy about that(?)......lol

there's another challenge to all my forumican friends.

i hope i explained that well enough bob
paula

I just returned from the PAN Forum where 23andMe gave a very informative and interesting presentation. I feel confident that their safety and privacy measures are strong.

I also had the pleasure of meeting a young researcher from Michael Zigmond's lab at Pittsburgh; she is doing PD DNA research, and called the 23andMe project a "god send."

Innovation and courage will change the face of medical research. This is a great opportunity to get involved in the science and advance knowledge. I hope many of you sign on.

I signed up a few days ago. Was I supposed to get an email confirmation?

in true parkie style, i picked the last few days to change my email address. if something was sent, i didn't receive it. is there someone at the foundation who we can email with these individual situations?

thanks,
paula

I did not receive an e-mail either nor did my friend.

Sunflower


QUOTE=paula_w;484214]in true parkie style, i picked the last few days to change my email address. if something was sent, i didn't receive it. is there someone at the foundation who we can email with these individual situations?

thanks,
paula[/QUOTE]

Paula: Thanks. I appreciated your usual "from the gut" replies to my question.

Addressing several of the answering posts I suspect 23and Me has been inundated with PD patient requests. I, too am on the waiting list and have been patient since year end when I first learned of the proposal. Paula, Carolyn and others are aware of my efforts to get Sergey even more personally involved in PD advocacy activities. Fortunately (for him) and unfortunately for me, he apparently has a very efficient staff at Google who filter out what they thiink is Spam. Next time I'll send my mail registered,return receipt requested.

Meanwhile,while we are all awaiting our "spit kits" let me again urge you to join several of us in one or more advocacy projects e.g.:

Parkinson's Action Network.

One or more of April's Parkinson's Awareness Month Activities.

Suppport for HR1362-- NATIONAL MS and PARKINSON'S DISEASE
REGISTRATION ACT.

Support for National Healthcare Reform and more specifically patient input to a (to be developed) Information Technology Database.

There are indeed many "eggheads" on this forum but I don't see much in the way of advocacy---apologies to those who do their part.

Finallly, if you like a little "goofy" please visit with me and over 3,000 of my fellow "goofies" on the PatientsLikeMe web site for PD patients.

Bob C aka bandido1

I have thought about the SPIT question from Bob and if I'm going to use it to help to inform patients about this study, I had better have it together in my own mind how it could best be defined. yesterday, i couldn't get the thought out clearly - i'm taking another stab at it and adding more reasons to use it. This just came up kidding around in a conversation, but we liked it and so do the other patients I've approached. I'm not trying to sell it and if anyone wants to use it, would appreciate if you let me know as I actually thought it was catchy enough to apply for copyright. But i wouldn't keep anyone from using it ....i copyrighted it to protect it so the pd comunity would have access to it.


post diagnosis, i felt like i had no future. i didn't worry about it all the time, but the shadow was there. pd was going to rob me of a future. then i began the fight. and ever since it's been about time. The pipeline site is all about time.....how long it takes to get a treatment through the pipeline. Three years ago we did a presentation called 'Unclogging the pipeline." We did a power point to the theme song from Mission Impossible. It was taking 14 + years to produce a treatment, but most fail at phase II and many were "me too" drugs. . The database is there for all to see - we are always updating it. it's a time machine that includes the history of all treatments [includes preclinical] and if you added up the years and money it's taken to do everything in the database [not the pipeliners but the science in the database] i think our feelings would be mixed or even distressed. Researchers are trying, but then there is the FDA.....i'm preaching to the choir.

I remember the morning i fully let the thought loose in my mind that i had been avoiding...the gdnf cancellation likely meant no treatment for my generation of pwps. The math was there to prove it. We were not going to see something as strong as this "cure" to some people. It was explained away as the placebo effect - 3 yrs in the UK..3 yr placebo. That took awhile to adjust to and of course i whined on the the forum here for ages. Reasons for it being cancelled changed all the time. Again, the cancellation was upsetting because there likely wasn't enough time left for us.

MJFF is using models that can work. They had us come to New York and listened to us. The ceregene trial has nit a snag, but no one can deny how quickly they moved...so it can be done. Question for Debi, I know Katie has been appointed to something at NINDS. Did she have anything to do with initiating this upcoming GDNF trial?

GDNF could have already been on the market. Some of the people i met in the trial have died, others divorced. Time marches on....and it is never neutral for us.

Now, it isn't neutral for those who are going to get PD someday either. they won't suffer for that part of their lives when they know they may get it but don't.....it will produce new people for the fight....beginning with Sergey- good people who appreciate life. How many of you have said your priorities and intentions have improved with the arrival of this m....f...illness? For those of you who don't think the description fits - think multi -faceted. i don't say that here or even in person anymore - but it's the most disgusting word i can think of and appropriate. then i'll be darned if it doesn't make you become the best you can be.

another point but not the last. The acronym came first, and the reasons are coming now

i remember i made up a joke about bin laden being smoked out of someone's yard [he was underground] when some came to spray pesticide on the yard. i thought it was funny and was telling it to some pwp - greg and aj were there i remember. nobody laughed, they just kind of looked at me. Aj was honest enough to tell me "it wasn't funny, but you are to watch". or something like that. haha sometimes i get paranoid and think the acronym isn't that big of a deal,[ well it isn't], and not particularly original. That could be, but it isn't what i am seeing in the initial reactions of those who are reading it. That is, the few who speak up.

So do we want to expand upon it as patients and make something to use? Creative minds want to know. Is this our video? lots of comedic possibilities. could we actually do some fun on you tube? isn't that what we said we were looking to do?

we know that people are needed for trials. Something like this is, IMHO, perfect! Don't have to deal with any costs except for the practically giving away cost of 25 dollars. you spit and send, they survey. So spit, send and survey replaces travel, having to deal with all the inconvenience, another person has to disrupt their life to help, and the trial doesn't make it past stage II. again - preaching to the choir.

Next if i understand debi, thru surveys, behaviors will be integrated into the data, as well as many other "individual" "medical" and behavioral traits to start looking for patterns. I have heard that DNA is not always reliable, but that is certainly not enough reason for me to stop.

So this study saves time and the faster we send it in the faster the study moves, so we have some control ,no more than some, it's up to us actually, how fast it moves to a certain degree. MJFF has a most impressive new patient advisory council, and i think they are going to use them and hope they do. These surveys are going to be very important. Our member Carey [indigogo] is on the council and she is well qualified for it. But MJFF has opened up to us all right here and they don't do anything second class.

This thread is a heavy one, i think more music threads would be a good idea to listen to while reading all this stuff. but i wouldn't be anywhere else. we can accomplish something here....maybe even in time.

and i didn't even get into the baby boomers. we all know what's coming.

everything unstable, even my posture. When i write these long ones i can just see some eyes rolling. but yesterday morning, i woke up to go the bathroom and pitched forward - went thru the window. A curtain saved me from being seriously cut -just my hands went thru. I lucked out - again. saw zuchinni flower's post, but i'm always yakkin'

and i keep writing...

thanks and i guess i'm sorry its long but not really....sunshine why don't you texas gals join back in? your brains are needed here...

off to cocoa village and some beautiful florida evening weather. ramble has been released.....thanks for receiving it again.

paula

Thanks for your reply, Debi. Much to think about!

Kathleen