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Pepsi Refresh Update


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What great news! My prayers are with you for your flight there and back. I'm not a fan of flying either but you are doing a great thing and you will be protected.

 

If you have a moment, maybe you could ask Dr. Cunningham about Lyme and PANDAS. I emailed her the other day about whether Lyme could produce high CamKinase without having PANDAS. I explained that we think my son may have been born with Lyme. I think I may not have worded it correctly because she responded that you cannot be born with Lyme and that you get it from a tick... I'm sure she is aware of Lyme being transferred in utero?

 

She did say she has seen some cases where the kids have documented cases of Lyme and they still have a high CamKinase. I'm curious though if an elevated CaMkinase rules out the possibility of solely Lyme. She didn't really say and maybe they don't know but I would be curious.

 

:D Thanks everyone! Hey, as far as the t.v. thing goes.....I really don't know all the details regarding the shoot. NBC/Pepsi may edit, pick and choose which projects to air, etc. I don't think it guarantees a television appearance.........I am hoping so, for PANDAS and Dr. C's sake, but, I, myself, would like to aviod the whole t.v. appearance thing if at all possible :ph34r: , but, I will do whatever is necessary to help this project and our kids!

 

 

I wish Vickie were going with me! :(

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Kelly,

 

I hope the TV thing works out. I would imagine from Pepsi's point of view, some causes make for better PR and television than others. Lord knows we have all had some good chuckles comparing the worthiness of other causes compared to what our kids and families have been through (those poor lemurs.)

 

Hopefully the coverage is substantial, gets the attention of the University and the alumni and anybody with deep pockets. Is there a way to somehow get the reporter to tag on there "If you would like to donate to further add to Dr. Cunningham's PANDAS research go to ......." ???? What could you put? Lynn's org?

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People can donate directly to

OU Pandas Foundation, P.O. Box 26901, Library - 162, Oklahoma City, OK 73126

 

Hopefully the coverage is substantial, gets the attention of the University and the alumni and anybody with deep pockets. Is there a way to somehow get the reporter to tag on there "If you would like to donate to further add to Dr. Cunningham's PANDAS research go to ......." ???? What could you put? Lynn's org?

Edited by Vickie
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Great job Kelly, Have a wonderful time and please confirm that low titers can still mean PANDAS!!! Wouldn't it be nice if the great docs who've been doing IVIG could each give Dr. C a synopsis of their work and success that you could give her? Working together we get much farther!

 

YaaaaaaaaY!

 

Nancy

And NO titers or pos for strep.

Our dd never tested high for anything

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First this is stellar news and I am really happy!!!

 

My other question is, has she come up with a concrete plan of what she will do with the money? Being realistic, in the research world $50,000 may be chump change, but on the other hand, it could fuel the beginnings of some things that we really want, like getting the CamK test legitimized as a diagnostic tool.

But what if some kids dont test + for this test it dont mean they dont have PANDAS??

Tracie

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Kelly,

 

I hope the TV thing works out. I would imagine from Pepsi's point of view, some causes make for better PR and television than others. Lord knows we have all had some good chuckles comparing the worthiness of other causes compared to what our kids and families have been through (those poor lemurs.)

 

Hopefully the coverage is substantial, gets the attention of the University and the alumni and anybody with deep pockets. Is there a way to somehow get the reporter to tag on there "If you would like to donate to further add to Dr. Cunningham's PANDAS research go to ......." ???? What could you put? Lynn's org?

 

Hopefully the fact that this cause was championed by a group of parents, virtually unknown to each other (only by screen names in cyberspace) might put up our intreats factor from NBC!

 

Great job, and good luck! Havefun,I can't wait to hear all about it!

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