First, for those of you who mentioned wondering about email confirmations after signing up...are you talking about having signed up on the 23andme website using a discount coupon to purchase the spit test? or are you referring to signing up on the MJFF wait list? Please clarifiy.

Second, the question about Katie Hood's new role at NINDS? She was appointed to serve on Council at NINDS. Jeff Martin had been a PD community representative several years ago and I also served on Council at NIEHS as well...these are all appointments are for four years and are subject to White House approval. Basically it brings a patient voice to the oversight process. These councils typically have two to four disease groups represented so having a PD voice at the table can be useful but it isn't the intent for that voice to direct the Council/Institute activities to pet projects. In my mind, its really most important that the representatives have urgency, reform, impact, efficiency, effectiveness all in mind as they contribute to the themes that come up at Council meetings. Our community certainly has that in Katie Hood and I know she is serving not only the PD patient community but all disease groups effectively as she is a strong, pragmatic voice for patient relevance at NIH.

Third, re facts around Sergey and family genetics and PD. Sergey has shared (in his letter attached to the 23andme opportunity and in his blog too.blogspot.com) that his mother had PD and carries the LRRK2 gene. He also states that he has been tested and carries the LRRK2 gene as well. He does not have PD but assumes he has an increased lifetime risk of getting PD based on what is known so far from studying LRRK2 PD patients and carriers.

Debi

I signed up on the mjff site, so i guess that means the waiting list.

thanks,
paula

I also signed up on the MJFF Site. Thought that was where we should.

Sunflower

Yes, the MJFF site is where you need to sign up if, you didn't receive an email directly from us with an embedded discount coupon. We sent those out to everyone in our database for whom we had an email and an indication in our records that the person had PD. So, if you weren't in our system as such, you wouldn't have received the coupon directly. Because we anticipated that folks beyond those initially reached would potentially be interested in the offer, we set up a mechanism for PWP to sign up via our site to receive a coupon, subject to availability. So, if you signed up on our site, you are signed up (in order of appearance) for the waitlist for coupons from 23andMe...basically, 23andMe is evaluating the responses from the first wave of outreach to see how many acted on the coupons before releasing additional ones. The offer is meant to recruit up to 10,000 PWP. While it is no guarantee that if you signed up on the MJFF waitlist you will get a discount coupon, it seems likely you will. More to come on that this week as the original coupons expire.

Hope that helps...

Debi

The important thing is reaching the critical mass of 10,000. If we don't get in off of the MJFF list, then that is a good thing since it means that the 23andMe outreach has been extraordinarily successful!

While it would be interesting to know my DNA profile at a discount, I am more invested in building the cohort.

I'm seeing group spitting with lots of funny results with people who are tremoring, have severe dry mouth, hit and miss, all done tastefully and not directly but implied. Doing it in a group with web cams and recording ourselves to put together a video.

I applied for another coupon using new email address. If i don't get one, i'm still up for the video. Question is - for debi - could they possibly get the 10,000 real quick? Would it be worth trying to make a you tube video. Is the campaign ongoing?

Grant R, if you are reading, please pm me. Grant has offered to help us make a video and get consultation from someone at his tv station. Anyone else in the business - patients that is- unfamous patients that is.. unless uber patient badly wants a spit cameo. No auditions. We'd take him. lol

Of course the purpose of the video would be to educate and the funny parts would be worked in. I'm going to start a thread in the invisible pd project room, but would first like to hear if the campaign is going to be long term enough to use it. It would be nice to have brief flashing cameos from all org CEOs...like Todd's idea......but that's probably pushing it.

Working together....i must be a real nerd to think that could happen. Nerdy like a fox that is......i think it could work if it's worth it....to get more discount sponsors perhaps? Definitely to get more patients. This is for patients and there really isn't a very good excuse for not trying.

thank you,
paula

Editing to add that stevem53 who has made several you tube videos has agreed to do this one. something always comes up.....forward, onward...

Hey Paula,

I shared your you tube idea with 23andMe folks today and they love it....will reach out separately to connect you directly with them. They loved "SPIT" too.

Debi

Thanks sooooooo much Debi. This is just the best news ever! I'll keep everyone posted... I want to have fun with this! Need lots of help...can't promote all this spit by myself. lol

thanks a million, or would that be a billion? Whatever - it's going to work; I have faith. Thanks for having some in us.

walking on sunshine,
paula

oh the ET did upload. it said it didn't. my husband says i react physically like ET when he imitated Drew Barrymore and threw their hands up so for a joke..but i didn't think it worked....lol....oh well let it set the tone.

After listening to the presentation at the PAN Forum, I said to myself "Why not". I signed up for the program. The 23 and me spitoon was in the mailbox when we returned from the trip. The instructions indicated that the spitting process takes the average person 2-5 minutes. Why is there plenty of drool on my pilolow each morning, but minimal saliva to spit. The DNA enriched test tube is on it's way to the lab. Hopefully these results will shed some light on the health history of our family tree. $25 is a great deal.

Gary

I'm curious as to why we're using spit instead of the kind of cheek swabs used in forensic medicine. The cheek swabs seem easier to me and would provide more DNA, too. It would make nicer video clips, too!