thereishope

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I'm going to bump this up for the lunch crowd:) We're still at 7!

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PLEASE pull all stops out. Remember, work harder this week and we can be done completely! Filter all your anger for this disorder into defeating it. Remember our goal...FUNDING FOR RESEARCH so our babies don't have to suffer!

I am cautiously optimistic for June, but I just feel better having a back up plan (at least a few people lined up) just in case. Maybe it's the whole "don't wanty to jinx it" by assuming anything. It seems we may now have 3 people that would be willing to take some part of it on. At this point, in my opinion, we can now wait and see how June pans out. But if something happens and we fall out of the top 10, on July 1 you'll definitely be getting a message from me! If something happens and July happens, you guys can do it however you want. I just cited how this month snowballed into a lot of tasks. It just kind of took on a life of its own.

So...right now, see who would be willing to take on a job and see if all can be filled. Discuss the actual game plan off forum. People really do watch us.

You may have this on here but someone needs to post an evening list on fb. Also, someone needs to be in charge of establishing alliances. That ,ideally, would be the one who would then keep in contact with them as you establish a trust right off the bat. In my opinion, I would think that's easier if one person makes the agreements, but all can have suggestions. I would elect someone to be charge of scoping out new possible agreements (newbies in July). Now, a lot would need to be done on July 1 or very soon in that first few days. Perhaps a "promotion manager" would be useful as well. Whomever takes this on can organized it how they want. I have everything in Microsoft Works but can change the formatting if needed. Again, hopefully we will win June!!!! But anything can happen and we need to be prepared with a plan in place so we don't lose valuable time.

I will be honest. I spend hours a day working on this. But someone may think of a much easier way than I did. I work on the morning post the night before. I post the morning list on fb around 7am ET and then I post the days' list on here. I look at rankings of our close causes that support us along with a few others I keep tabs on. I field emails that causes send me, that can average 20+ a day sometimes. I get emails throughout the day. Karen has taken on the job of comments but I do comment too on occassion depending on what the status of causes are. I also write down the rankings of all causes we are voting for. After lunch, I post another fb status update, an informational one about PANDAS the disorder, not the Pepsi contest. I occassionally pop on here to see if anyone has questions. I do my voting then I try to post our cause on at least 5 places a day. After dinner, I post the night's voting list on fb, around 5:30 pm ET. Then once again, I look at my list, read the comments on the Pepsi Page and cross reference them with whom we have been voting for. If we do not have an agreement of "no comment" I need to see if they were on our pepsi page. That's the only way I can track it. Some causes I email nightly in lieu of comments on their pepsi page. I try before bed, around 11pm, to write a final status on the fb page. I also watch who our new fans are on fb to see what other pepsi casues have joined it to keep tabs on us. Now, I admit, there are some casues that do not do nice things, but hopefully you will other cause to back you up. You may have to call a cause too, on the phone, if they request it. For July, if we do not win June, we need some new alliances since many will be winning. This is also why we needed to bring up June now. Because we have a good chance in winning, I am putting off making new agreements until see know the outcome of June. So...if by chance we lose, On July 1 , we need to scurry for agreements. I'm sure those who roll over with us will keep us on, but we need to fill the holes. The new people will be the ones to make these new agreements. I believe one spot in 50K will already be filled in July for winning, maybe there's 2. I don't know what other causes will be strong contenders. I do have everything pretty well organized. I would have to update a few things. I could forward everything to the person and talk on the phone for overview. Some causes do have teams and such so the jobs could, in theory, be split up. For me, I just found it "easier" to do it myself as I was able to make split second decisions and I had a lot organized in my mind like a puzzle. In we do not win June, I need to just step away from this. I will vote, but that is it. If you have questions, I will of course answer them. I need to detox my brain from everything that has happened and I need to spend time with my family. I spent 2 months doing this and one was summer vacation with 3 kids running around the house. It's tiring. There has been A LOT of drama this month with the pepsi Refresh Project (with some causes) and it actually affects you emotionally. I've spoken to other causes and they agree that they have felt the same.

Time to bump this up! Now my little girl is turning 4 on June 30, so I am depending on you guys to bump it up on the last day Don't know what we're doing yet for celebrating her bday but we may be out of the house for bit. We're still 7! Way to go!

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Yeah!!!! Look for anyone that looks drunk and tell them that they don't remember that they promised you they would vote!

Bumping for the lunch crowd on the East Coast and the morning crowd on the West Coast!

Just so you know the facebook voting link automatically gets abbreviated on latitudes since it is long. You will need to click on it, have it go to the page, then cut and paste what is in your browser in order to pass that one on:) Thank you! Let me try this "http://apps.facebook.com/pepsirefresh/idea/view/id/e4967728-67c3-102d-9528-0019b9b9e205?ref=mf&fb_sig_in_iframe=1&fb_sig_iframe_key=1ff1de774005f8da13f42943881c655f&fb_sig_locale=en_US&fb_sig_in_new_facebook=1&fb_sig_time=1277388552.504&fb_sig_logged_out_facebook=1&fb_sig_added=0&fb_sig_country=us&fb_sig_api_key=f96f7542a8c3ccef4ea4a3dbb7a59b0e&fb_sig_app_id=263136462520&fb_sig=f34ef3c0abd973b717581402e89ea168&auth_token=ba4fc289f8ce477b5672e31b3cc23ede" Yep, that worked. The fb voting link is in between those quote marks. Just omit the quote marks when cutting and pasting.

Many who have had IVIG mention "turning back the pages". After IVIG, the child becomes worse,old symptoms that were long gone suddenly resurface, etc. In the keyword on the forum, you an search "turning back the pages" and I'm sure you will find references. Have you been giving Ibuprofen to see if that helps? What antibiotic is he on?

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Recently posted on facebook... keep in mind that I am tired and could not think of a clever name for the event:) This week is declared P.A.N.D.A.S.-Refresh the Research Voting Fest! Help us win a $50K grant for P.A.N.D.A.S. Research! We have ONE WEEK LEFT to win. Please cast a vote every day and pass it on everywhere. This autoimmune disorder needs to be dealt with head on and we are the ones who will get the job done! Vote from the Pepsi Page http://www.refresheverything.com/PANDAS or http://www.refresheverything.com/search/?q=pandas Vote from the red box! Vote from Facebook http://tiny.cc/oxdjl Promote it on Twitter http://pep.si/9EoRvi In a matter of seconds, your vote can be cast and you can make a difference. A single click (no cost at all) can save a child. How can you pass that up? P.A.N.D.A.S is a autoimmune disorder that causes OCD, tics, sensory problems, anxiety, and more mainly in kids. This begins with a strep infection (often without a sore throat or fever). If diagnosed correctly, they will be saved from a misdiagnosis of another disorder, unnecessary psychotropic drugs, and unneeded suffering. If treated properly, remission is possible. Please vote every day and help our kids! Thank you!

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I need to vent....Is anyone else on facebook having trouble with getting their friends to vote and/or repost the link? I am sad that my sisters-in-law and brothers-in law cannot even "share" the voting link app once a day yet they can post ways to help out with the oil spill and how to donate. I'm not even asking for money! It just hurts me that they know I am spending all ths time on this and they can't share the link. What is so wrong with helping these kids and passing the word on? Anyone?

Also, if you get a "connection error" when clicking the vote button, I have found that if I make the one long list into 2 smaller lists, the problem will be solved.

One week to go! Please send good thoughts my way. Let's regain #6 TODAY. Vote, then promote it somewhere, anywhere. As always, no comments needed. Thank you! Promotion idea: I am a fan on my local zoo's page on facebook. So, you know what I posted... Updated 6/23 LATITUDES morning and afternoon 1.PANDAS 2.Sophias Cure 3.Jett 4.walk on foundation 5.Skip 6.Ataxia 7.Woolly Pocket 8. What I Can Do Makes a Difference 9. gktw 10.Narcolepsy www.refresheverything.com Paste into search box... PANDAS / JETT / "Sophia Cure" / "provide medical equipment" / "skip" / "narcolepsy research" / "quality assist" / "woolly pocket" / "give kids the world" / "ataxia" LATITUDES evening through night 1.PANDAS 2.JETT 3.Sophias Cure 4.rryr 5.Skip 6. WMS 7. Sierra academy 8. Area 13 special olympics 9. Camp out against cancer 10. Give Kids the World www.refresheverything.com Paste into search box... PANDAS / JETT / "Sophia Cure" / "rryr" / "skip" / "give kids the world" / "sierra academy" / "nicole searfoss"/ "gavin thomas" / "caritas group"

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Oh...this is the part I don't like since some causes are very good causes. The ones you mentioned I have not seen support from and I did try to contact one directly with no response. Our votes are being spread very thin as is. So, currently I do not have a spot for them to vote today. Missing Patient is secure for roll over again. Erika Kate is not. I don't know if they would want to do it another month. Perhaps, I can look at our casues and see which "casual ones" are not returning support. Some I HAVE to keep on the list. We really owe them. So, I will see if we can direct some votes to Erika Kate to help. For now, I don't want to seem bossy but the lists I put up reflect those who are supporting us, pushing for us, voting for us. So, I would politely ask to follow the list. The list to follow is the last post on this thread. Then there is a June thread in the body of the forum. They are the same list, just in different spots. I look at my list, comments, email, etc throughout the day. I will try to see what we can do.

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WE NEED TO FIGHT BACK! The cause that just took our 6th place is not one we want to lose to. It may ultimately benefit good people, but in my opinion are not doing it in a moral way. We need to fight with everything we have and show them that we will not sit here and do nothing. We NEED to reclaim that spot. Not only for us but for all the causes that are falling due to want they are involved in. Please everyone, find it somewhere to push harder. Even if you post it in one spot, it may help. I may sound desperate, but we cannot lose our spot to them. We need to show them how PANDAS parents fight for their kids and how bad this research is needed! Thank you!