Today Show/Pepsi giving away $100K!

[thereishope]

ATTENTION! Pepsi is giving away $100K through the Today Show! This is separate from our current contest. Please do this for PANDAS! http://www.today.msnbc.msn.com/id/37363393

 

Write what you like and personalize, if possible. If you are short on time, here is a general example of what to write. Just copy and paste if you're in a hurry, but something personal may help.

 

"I care about kids that are suffering from an autoimmune disorder affecting the brain. We need funding for research that will help them! Please select Dr Cunningham's PANDAS research at the Univ of OK!

 

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) is an autoimmune disorder that causes OCD, tics, sensory problems, anxiety, and more. If a child is diagnosed correctly, they will be saved from a misdiagnosis of another disorder, unnecessary psychotropic drugs, and unneeded suffering. If a child is treated properly, remission is possible. Please help our kids and help fund Dr. Cunningham's research! "

 

 

A picture is REQUIRED for submission. Consider using a pic of your PANDAS child or Dr Cunningham. Here is a link to Dr Cunningham's photo

http://s905.photobucket.com/albums/ac251/P...rCunningham.jpg

Caption: Dr. Madeleine Cunningham

 

Please do this! It will not take that long.

Edited June 10, 2010 by Vickie

[MMC]

I tried doing this, but could not figure out how to attach the photo. I have it on my desktop as a .jpg file, no problem. The Pepsi site allows you to browse to it...but there is no "attach" button. Not sure how to get the pic loaded on the site...and it would not take my entry b/c it was missing. ??

[Phasmid]

I did send it in. I attached M.C's photo off her web page at OU. Here is what I wrote:

 

 

 

"I care about children who suffer from a neurological disorder that results from an infection with the bacterium, Streptococcus pyogenes. I care about finding the most effective treatment for these children. But, effective treatment is difficult to obtain until an effective diagnosis can be made. At present, it is difficult for parents to receive a proper diagnosis for their child(ren) due to the fact that a suitable diagnostic test has not been developed. Meanwhile, children suffer with the associated debilitating symptoms, including a very sudden (sometimes overnight) onset of anxiety, obsessive-compulsive behaviors, rage attacks, motor tics, uncontrollable vocalizations, echolalia (repeating words or phrases heard), attention problems, and often the necessary withdrawal from the school classroom. This happens suddenly, to children who were previously without any such set of symptoms. It is devastating to the child, as well as the entire family.

 

This crippling disorder has been termed Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS). It isn't life threatening, however, it is life altering. For most children affected, it is difficult to carry on normal activities throughout the day. It impacts the entire family tremendously.

 

The good news is that there is a team of research scientists led by Madeleine Cunningham, Ph.D., at the University of Oklahoma working on a diagnostic test for this disorder. I care that her research is funded, and that her team continues to develop this test, so that it may be used in a clinical setting. The test, when made available to families, would involve testing the blood levels of a particular enzyme that is associated with infection by Streptococcus bacteria. Dr. Cunningham has focused her research on the association between infection and autoimmune processes for many years. She and her team are very close to finding the remaining pieces of the puzzle associated with PANDAS. Her team needs funding in order to make it to the homestretch. They need funding so our children can have the diagnosis needed for proper treatment.

 

I care about funding Dr. Cunningham's research of PANDAS because I have a little boy who has suffered for six long years. The dozen or so physicans who examined him when he first became ill had very little to offer in terms of a diagnosis or treatment. We were told that he just had a little tic disorder that would go away in a few years. Then we were told he simply had ADHD. Following that, we were told that it was due to allergic disease. At one point, we were even told that it could be due to "ineffective parenting."

 

We finally found a physician who believed in an infectious etiology to the symptoms my son exhibited. When given a simple antibiotic, my son's symptoms, which kept him home from school for several weeks, completely resolved. Yet, the majority of physicians will not give this simple treatment, for lack of a diagnosis. Please, help us."

[forjpj]

Did it!! I saw this yesterday on the show, but I didn't think we would qualify. I'm so excited!!

 

I care that my son has been battling P.A.N.D.A.S. (pediatric autoimmune neuropsychiatric disease associated with strep) intensively for over a year, I care that in effect my son has lost some of his last years of childhood innocence, I care that my son has probably been battling this disease in some form for 8 years, I care that my daughter has had to watch her brother slip away, I care that we had to move our daughter away from our house for 6 weeks, I care that my son could have ended up in a psychiatric facility if we hadn't discovered this information, I care that my family will never be the same, I care that other families suffering might not have this information, I care that doctors might not have this information, and I care so that other families won't have to face similar struggles! I care for the innocent Undiagnosed and misdiagnosed children!!

 

I care about kids that are suffering from this autoimmune disorder affecting the brain. We need funding for research that will help them! Please select Dr Cunningham's PANDAS research at the Univ of OK!

 

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) is an autoimmune disorder that causes OCD, tics, sensory problems, anxiety, and more. If a child is diagnosed correctly, they will be saved from a misdiagnosis of another disorder, unnecessary psychotropic drugs, and unneeded suffering. If a child is treated properly, remission is possible. Please help our kids and help fund Dr. Cunningham's research!

Thank you, Sarah S. Johnston

[thereishope]

Someone on facebook asked whether Dr C's work would be considered a non-profit. This is how I responded...

 

I thought about that. But since when we donate to Dr C's work through the Univ of OK, we can deduct the donation, I consider that non-profit. I don't believe PANDAS Network is a non-profit, it's very very good website, but not a non-profit.. PANDAS Resource Network (PRN) is. If anyone wants to do that, that's fine by me. Maybe if you list PRN, say PRN with proceeds going to Dr Cunningham work.

 

 

In reference to the question about the photo. Did you save a photo on your computer? If so, when you click "browse" it connects you to all your files. You find the one you want to use and double click. The photo itself will not pop up on the entry but the info of it fills the box. You should then be able to submit it.

 

 

One moment.....Since Lynn Johnson heads PRN and she has been affiliated w/ the Today Show, would there be a conflict of interest if anyone lists PRN? Opinions on PRN vs just listing Dr C would be appreciated.

Edited June 10, 2010 by Vickie

[thereishope]

Great job! I admit that mine was a bit rushed. I'm juggling the other Pepsi stuff too. Yours is soooooo much better:)

 

 

I did send it in. I attached M.C's photo off her web page at OU. Here is what I wrote:

 

 

 

"I care about children who suffer from a neurological disorder that results from an infection with the bacterium, Streptococcus pyogenes. I care about finding the most effective treatment for these children. But, effective treatment is difficult to obtain until an effective diagnosis can be made. At present, it is difficult for parents to receive a proper diagnosis for their child(ren) due to the fact that a suitable diagnostic test has not been developed. Meanwhile, children suffer with the associated debilitating symptoms, including a very sudden (sometimes overnight) onset of anxiety, obsessive-compulsive behaviors, rage attacks, motor tics, uncontrollable vocalizations, echolalia (repeating words or phrases heard), attention problems, and often the necessary withdrawal from the school classroom. This happens suddenly, to children who were previously without any such set of symptoms. It is devastating to the child, as well as the entire family.

 

This crippling disorder has been termed Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS). It isn't life threatening, however, it is life altering. For most children affected, it is difficult to carry on normal activities throughout the day. It impacts the entire family tremendously.

 

The good news is that there is a team of research scientists led by Madeleine Cunningham, Ph.D., at the University of Oklahoma working on a diagnostic test for this disorder. I care that her research is funded, and that her team continues to develop this test, so that it may be used in a clinical setting. The test, when made available to families, would involve testing the blood levels of a particular enzyme that is associated with infection by Streptococcus bacteria. Dr. Cunningham has focused her research on the association between infection and autoimmune processes for many years. She and her team are very close to finding the remaining pieces of the puzzle associated with PANDAS. Her team needs funding in order to make it to the homestretch. They need funding so our children can have the diagnosis needed for proper treatment.

 

I care about funding Dr. Cunningham's research of PANDAS because I have a little boy who has suffered for six long years. The dozen or so physicans who examined him when he first became ill had very little to offer in terms of a diagnosis or treatment. We were told that he just had a little tic disorder that would go away in a few years. Then we were told he simply had ADHD. Following that, we were told that it was due to allergic disease. At one point, we were even told that it could be due to "ineffective parenting."

 

We finally found a physician who believed in an infectious etiology to the symptoms my son exhibited. When given a simple antibiotic, my son's symptoms, which kept him home from school for several weeks, completely resolved. Yet, the majority of physicians will not give this simple treatment, for lack of a diagnosis. Please, help us."

[dut]

Hi - I did it but got a server error and the page had been wiped .. so not sure if it went or not.. did anyone else get the same "server error" message?

[thereishope]

dut, no I didn't get a server error. If you cannot complete it, it's okay.

 

This was a response I got in reference to a non profit...

 

"OU Pandas Foundation, P.O. Box 26901, Library - 162, Oklahoma City, OK 7312.” .

 

OU PANDAS Foundation is the Univ of OK (Dr C's research)

 

Thank you, Linda, on facebook!

[EAMom]

Okay...my version (I cut and pasted others and then added my own stuff):

 

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) is an autoimmune disorder that causes OCD, tics, sensory problems, anxiety, and more. Children with PANDAS have also been repeatedly misdiagnosed with ADHD, tourettes, bipolar disorder, and oppositional defiant disorder. If a child is diagnosed correctly, they will be saved from needless suffering and ineffective and dangerous psychotropic drugs. If a child is treated properly, remission is possible. Please help our kids and help fund Dr. Cunningham's research! Dr. Cunningham is developing a test for this disease. With proper diagnosis, these children can receive the necessary and correct treatment. We need funding for research that will help them! Please select Dr Cunningham's PANDAS research at the Univ of Oklahoma!

 

I care because my daughter has been battling PANDAS for over two years. I care because my then 7-year-old daughter was hospitalized with malnutrition/acute food refusal caused by severe OCD. I care because the well-intentioned nurse suggested my young child might need long-term psychiatric hospitalization. I care because we had to contact over 20 physicians about her sudden onset behavior changes (anorexia nervosa, rages, OCD, tics, anxiety, depression) before anyone suggested we test her for strep. I care because the physicians who treated her had no hesitation in dispensing powerful psychotropic medications yet we had to beg and plead for a simple throat culture and antibiotics because "her throat didn't look red." I care because my family will never be the same. I care because there are other families suffering from PANDAS who don't have the needed information to help their children. I care because most doctors do not have the correct information to help these children. I care because with the proper treatment, my daughter is now healing.

[thereishope]

Perfect. Thank you to everyone.

 

 

Okay...my version (I cut and pasted others and then added my own stuff):

 

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) is an autoimmune disorder that causes OCD, tics, sensory problems, anxiety, and more. Children with PANDAS have also been repeatedly misdiagnosed with ADHD, tourettes, bipolar disorder, and oppositional defiant disorder. If a child is diagnosed correctly, they will be saved from needless suffering and ineffective and dangerous psychotropic drugs. If a child is treated properly, remission is possible. Please help our kids and help fund Dr. Cunningham's research! Dr. Cunningham is developing a test for this disease. With proper diagnosis, these children can receive the necessary and correct treatment. We need funding for research that will help them! Please select Dr Cunningham's PANDAS research at the Univ of Oklahoma!

 

I care because my daughter has been battling PANDAS for over two years. I care because my then 7-year-old daughter was hospitalized with malnutrition/acute food refusal caused by severe OCD. I care because the well-intentioned nurse suggested my young child might need long-term psychiatric hospitalization. I care because we had to contact over 20 physicians about her sudden onset behavior changes (anorexia nervosa, rages, OCD, tics, anxiety, depression) before anyone suggested we test her for strep. I care because the physicians who treated her had no hesitation in dispensing powerful psychotropic medications yet we had to beg and plead for a simple throat culture and antibiotics because "her throat didn't look red." I care because my family will never be the same. I care because there are other families suffering from PANDAS who don't have the needed information to help their children. I care because most doctors do not have the correct information to help these children. I care because with the proper treatment, my daughter is now healing.

[P_Mom]

Thanks for the info. Vickie! Getting ready to do this today!

 

Kelly

[tpotter]

I tried twice, and it said there was a website error

[dut]

Sorry.. I'm obviously too techincally challenged.. I tried again but got server error aiain.. hopefully it went thru....

[CopterNadle]

nice forjpj... thanks for the info...

[EmersonAilidh]

"I care about furthering research for P.A.N.D.A.S., Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci.

 

P.A.N.D.A.S. is an autoimmune disease that attacks mainly the brain of those who have it, resulting in numerous

other disorders (namely OCD & Tourette's Syndrome like twitches). P.A.N.D.A.S. is an Autism Spectrum Disorder caused by dysfunctional

GABHs antibodies that is unpredictable & often causes unexplainable symptoms of other disorders like ADHD. It typically has an overnight

onset, meaning that those of us with P.A.N.D.A.S. went to bed one night fine & woke up experiencing a life altering autoimmune condition.

 

My journey with P.A.N.D.A.S. began in the sixth grade when one day, I woke up twitching. These twitches eventually became so severe that I

was placed in the Special Ed department of my school, even though I was perfectly functional otherwise. After years of being told that I

had Tourette's, then OCD, then Epilepsy, then Narcolepsy, I was finally told by a psychiatrist that it was P.A.N.D.A.S. Now, about to begin

my sophomore year of high school, it hasn't gotten much easier. Although my twitches have become more manageable, the disease is still

going strong after all of these years. There is nothing I want more than to make sure schools & teachers understanding of this disease

that effects hundreds of thousands of children worldwide, to make doctors equipped to recognize P.A.N.D.A.S. & treat it accordingly, & abovea

all else, to make sure that every child with P.A.N.D.A.S. knows what it is that is happening to them.

 

I am one of the few people in the P.A.N.D.A.S. community that writes from the patient's point of view. I am not a concerned parent, I am

not a doctor, I am a fifteen year old girl who has been experiencing P.A.N.D.A.S. for five years now. I can tell you better than anyone that

there is no more worthy cause. Five years ago when I first started experiencing the disorder, little was known about it. I was misdiagnosed

multiple times & put through more unecessary tests & treatments than I could even begin to tell you. By donating to Dr. Cunningham's

research at the University of Oklahoma, you would be helping to ensure that no child has to go through what I did. By furthering

P.A.N.D.A.S. research through Dr. Cunningham, you would be helping these doctors to form an official diagnostic test you would be making

sure that no more children spent years being treated for something that they don't have. By granting the money to Dr. Cunningham's research,

you're helping to one day find a cure, or at least a treatment, so that thousands of children with P.A.N.D.A.S. in the future won't have

years of their life stolen from them by a disease.

 

Please, make sure that this condition doesn't have the opportunity to do this to other people. Please, fund Dr. Cunningham's research at the

University of Oklahoma."

 

 

 

 

 

 

Won't let me send that. It keeps saying "Input data invalid! No HTML tags please!"

I don't know what to do. :/