thereishope

In order to get more support from various groups, I changed my first post on here. Let me know what you think. This might change once we get to know the newbies in June. I have complained 3 times about the comments to pepsi

I will add that it is VERY IMPORTANT to use your whole 10 votes for the causes I listed.

Phone number is listed I think under guidelines 1- 800-768-2784 They have to be careful in what they say so they are held liable for any technical problems, hence why they say it's our computers.

Peg, from what I understand one or more finalists did "disappear" before. That's why if you are close to the top 10 you don't stop pushing. I said to pepsi, you mean if an impoverished communtiy who has barely any internet access and cannot vote for themselves are suppose to find a way, daily to find a computer and cast a vote? That poor woman on the phone must have wanted to hang up on me so bad.

Peg...In my opinion...we are NOT cheating. According to Pepsi, we would not be following the rules. Pepsi should change the whole thing so here is no trading votes and everyone gets one vote a day. We just can't win the grant to have Pepsi come back and say "Um..no you didn't". I'm sorry, everyone. I am. This isn't easy for me to say to stop voting on behalf of others. I planned June around being able to vote on behalf of others. I think it may be best to put out there that if the community feels someone else should take over the campaign, please let me know. Openly discuss it. I will understand. I do think I am making the right decision. I do wonder if their new auditing system will be able to tell how fast votes were cast from a single IP addresss.

JAG, I asked so many different scenarios. I think this stinks. I think it is not fair. I never used the word "proxy" on the phone. Perhaps they can track if the IP was a home or business? The "little guy" doesn't have chance against schools or orgs. I wonder if they will be able to tell how fast the votes came in from each IP address? Guys, ll I can say, is that if we win, we did it legit as we could. If we lose, we played fair. We are still trying to establish PANDAS as a disorder in the public's eye. I can't let any idea of "cheating" mess up the progress we have made as a community.

Is it a problem if they have a pepsi account/ They do need to be registered somewhere so pepsi can attempt to track them, if needed.No annonymous votes.

Yes, more than person (13+) can vote from the same computer. I think the red flag will be when they notice a riduculous number of votes being cast from the same IP address. So, your whole family can still vote!!!!!!!!!!!!!! Please vote for our supporters. We NEED them!

I've asked pepsi many times about the comments. The answer is " we will pass on your request to a supervisor. We believe it the problem is the computer". Okay, so if we are parents voting from home computers, we are out of luck? Obviously schools and organzations have an advantage with better computers. pepsi went on to say that maybe they will lookk into deleting comments in future month. Well, that doesn't help us!

If you were voting on behalf of someone, if you feel comfortable asking them to at least vote for PANDAS, please do so. Here is a link to amore general page to vote from. It shouldn't freeze up. http://www.refresheverything.com/search/?q=pandas

I wrote warrior wish a congratulatory email with some other stuff.Have not heard. I am so distraught right now. I think we should be able to vote on behalf of people who grant permission. I gave pepsi every scenario and it was "NO,NO,NO". I know other will cheat. I have spent HOURS every day working on this for the last week. Please know I have tried my best, adapted to what has been thrown at me, and just continue to support this.

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Yes, I got off the phone with Pepsi and I'm sorting this out. They said we cannot vote on behalf of people(even with given consent and even if it is one person per email). Every single person must cast their own vote. I expalined how I know for a fact this will not be honored by some entries. However, and I hope everyone backs me on this. I am stopping voting on behalf of others. WHEN WE WIN, we will do it with our heads held high!I am issuing a 10 count must vote list in a few minutes.

I got off teh phone with Pepsi. We cannot vote on behalf of oterhs who cannot get to the computer. They admitted it is the honor system. But we have to hold our heads up high and do this right. I am issuing an entire "Must vote list" in the next few minutes.

Chemar, if you read this, an you change the title to Pepsi Refresh-JUNE. I'm half asleep and woke up to a bunch of chaos. Thanks.

It's JUNE! We learned A LOT in May and we are planning to start June out big! We cannot vote on behalf of other people in June. Every single person must cast their own vote. I know other submission may not follow this rule, but when we win, we will hold our heads up high. Vote for these 10 every day in June unless I change the list. Do not comment. I will do that at the end of the day. Every so often you may see the list change. I will bring attention to that change when it occurs. Morning to afternooon/early evening.... 1.PANDAS 2.JETT 3.Lil Iguana 4.Skip 5.What I Can Do Makes a Difference 6. Colo Nesco 7. Ashlea Denton 8. Free to Be 9. Tunes for Troops 10.Harrison Skate Park Paste this in the search box on the Pepsi site to vote for the morning/afternoon 10.... PANDAS / JETT / "Lil Iguana" / "Skip" / "Quality Assist" / "Colo Nesco" / "Ashlea Denton" / "Free to Be" / "Tunes for Troops" / "Harrison, AR" Early evening to night time.... 1.PANDAS 2.JETT 3.Lil Iguana 4.Skip 5.What I Can Do Makes a Difference 6. Colo Nesco 7. Ashlea Denton 8. Rise up 9. Lake Reba 10.Hearing Speech and language center Paste this in the search box on the Pepsi site to vote for the evening/night 10... PANDAS / JETT / "Lil Iguana" / "Skip" / "Quality Assist" / "Colo Nesco" / "Ashlea Denton" / "Rise up" / "lake reba" / "center hearing speech" Use your discretion of what morning, evening, night is. I will not address this rotation on facebook which is more of a public forum. If you read both groups (this one and fb), follow this one. Thanks! If you are having a problem w/ our direct link loading, please let Pepsi know by calling 1-800-768-2784. They claim it is our computers at fault, will not delete comments, and we lose votes.

This is what I sent out to our main suporters.... If you haven't seen this already. The new rule clarified by Pepsi... "Is proxy voting allowed? Proxy voting is not allowed. We understand this may not have been clear within the original Application Guidelines, though always against the spirit and integrity of the program. As of June 1st, any idea that uses proxy voting which includes but is not limited to creating multiple and/or dummy emails may be disqualified." PANDAS does not have false accounts or dummy accounts. Every vote cast leads back to one single person. If we say 100 votes that means 100 peole have voted.I am calling pepsi at 8 am central, but expect them to be swamped with calls. Please look into your own voting. If the number we agreed on changes do to this rule clarification. I NEED to know asap. Pease, always rememebr we are doing this for children and do not want to be disqualified. Thank you. PANDAS

Pepsi does not open until 8am central. This is pepsi's defintion of proxy voting... "Is proxy voting allowed? Proxy voting is not allowed. We understand this may not have been clear within the original Application Guidelines, though always against the spirit and integrity of the program. As of June 1st, any idea that uses proxy voting which includes but is not limited to creating multiple and/or dummy emails may be disqualified." Every single vote of our leads back to one single person. If this is not the case with your voetr registration list, weed through it, perfect it and get back to me asap. I will call pepsi at 8am central time. However, in my opinion, what we do is not proxy voting as defined by pepsi.

As for proxy voting, I need to talk to pepsi. We are not voting with dummy accounts. I need to talk to them. If you haven't voted proxies yet, please hold off doing so. Check back here in a bit. Not sure what time Pepsi opens

If we email the NIMH to encourage and demand an updated PANDAS page, do you have any suggestions of how that should be worded? Use Buster's Fact sheet as an example of what would make us happy? There was a morning meeting among the presenters where some of these things came up, so I wanted to add my perceptions... From what I could gather, Dr Swedo talks about pex and IVIG as a treatment/cure for that particular episode. She acknowledged that with another infection/exposure, it could start all over again. There wasn't time to really get into this. But I was left with the impression that her focus has been on ending a particular episode, not on "curing" the susceptibility to getting Pandas again. My understanding is that Dr K feels IVIG is a cure long term. I hope he's right. But I don't know that Swedo has focused on the long term. So when she talks about cure, I think her focus has been on the short term, from a research perspective. She does have a personal preference for pex as a cure for that episode. She feels that since there's no external human blood product involved, there's one less risk factor. But she does say there's certainly risk and shouldn't be entered into lightly. In her studies, they did pex for 5 consecutive days (not the 3 currently done at Georgetown). So the 90% removal of antibodies may be somewhat lower in current treatments. And I clarified a misunderstanding I had - she did not do true plasma exchange in her studies (pheresis followed by IVIG). She did the same type of pheresis (dialysis only) that's being done today. Re: the canary response - she said it made total sense to her that Pandas kids could have a response to exposure (not necessarily full blown infection) to strep or other infectious agents. The immune response when an antigen is detected is to mobilize the entire army. Initially, the intruder's identity isn't known, so the body mobilizes all of its forces. Once the intruder is identified, only those swat team antibodies that already exist, or the T-Cells needed to fight a new enemy, stay on the battle field. The rest of the troops are called back home. So the body moves from a general vigilant response into a specific, targeted response over the course of a few days. In Pandas kids, the Pandas response can be triggered during this general immune mobilization. For anyone who wants to see presentation with some of the same slides Swedo showed at AO, including the % of comorbid symptoms, here's a link to a DAN conference presentation from a few years ago: (you have to scroll down until you find this particular presentation) Progress and Pitfalls & Notes on PANDAS http://www.autism.com/danwebcast/video-lis...erence=SanDiego She said there do seem to be clusters of outbreaks of Pandas, caused by only a handful of strep strains, and that there's a strong "predisposition" factor - Pandas kids often have relatives with RF and OCD. So she was aware of "clusters" of outbreaks where both the strain and vulnerable families collided. (I thought of SF mom) Re: the study on penicillin and azith - I believe those slides were referencing an old study that she did to show the efficacy of prophylactic abx. I don't think it's a current study. You can see the slides if you go to the DAN presentation listed above. Ok, two final points if you've stuck with me this long... 1. We talked about what things we as a grass roots community could do to help move things forward. Her answer was that we should make sure that kids with other illnesses don't get caught in the Pandas net - that she understood how parents want to get there kids healthy and it's natural to hope that your kid might have Pandas instead of something else because it comes with the hope you'll get them back to baseline. But kids mis-diagnosed as Pandas would make the Pandas conversation murky and would obviously do an injustice to the kids. She felt Dr Cunningham's test would be proven to be a very good diagnostic tool once the current study was published. And she felt very strongly that only one treatment of IVIG or pex should be needed to cure a true Pandas child - but again - she was speaking in terms of cure for that particular episode and she was thinking in terms of high-dose IVIG (If I understood her correctly). She understands that subsequent exposures can negate the "cure". 2. Someone brought up the subject of the outdated NIMH web page. She nodded in agreement and said her department was responsible for the content of the page but had no authority to make updates. That belonged with a public communications department. But she said we could send emails and she'd use that them to support her case to make changes. The email she'd like us to use is: OCDNIMH@intra.nimh.nih.gov Put "Pandas Webpage Update" or something similar in the message header, as this is also the email address being used to recruit study participants in an autism/ocd study. Initially, she was going to have us email her directly, but when I said I hoped she'd get hundreds of emails, she changed her mind and said to use this one. So just be sure to put something in the header that separates your email and ask that it be forwarded to Dr Swedo's attention.

Last day in May! We're ranked 21. Lemurs are ranked 20. We love animals, but I am ready to show that our kids' mental and physical health are more important!Try to get your voting done early today. The site may slow down later in the evening w/ applications being finalized for midnight submission. Check back here befor...e you vote June 1. Some things are changing for June. Thank you!

You guys are voting machines!!!!! I mean that. I am working endless hours to try to get every vote reciprocated. Some of the groups that have agreed to post us on in newsletters and such, I have told them to put www.refresheverything.com and search keyword "PANDAS Kids in Crisis" to just vote from the red box. That way they do not have to load up our whole page. I too worry about losing those "stray votes" that would have found us in the media, groups, etc.

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I think since it is Memorial Day weekend and it is a cause for and by veterans...it helps.

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