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Information received from Dr Michael Cooperstock by email concerning research funding....I have the actual document in email and will be happy to forward the document received:

 

MISSSOURI PANS PROJECT : Proposal

 

At Women’s and Children’s Hospital during the past two years we have seen 50 children and young adults with an acute-onset neuropsychiatric disorder that has interfered with living long enough and strong enough to have come to our attention.Much is shared between them, yet we have found each is a unique individual with his or her own special strengths and concerns. We are progressing toward a formal publication describing these individuals. It is already clear that some have had a unique predisposing medical problem, and several have had large head circumferences, suggesting an importance for an unknown, unique biological/anatomic predisposition. Family histories strongly suggest a genetic component.

 

There have been about as many without definite Strep infections as there those in which Streptococcus may have played a role. More than 80% of those tested have had at least one elevated brain autoantibody in Dr. Cunningham’s Moleculera panel.Many have other evidence of autoimmunity as well. We are trying to assemble a preliminary idea about the effects of anti-inflammatory treatments and prednisone.

 

In addition to the Moleculera antibodies anti-dopamine receptors 1 and 2, anti-lysoganglioside, anti-tubulin, and the CaM KII release assay, Dr. Cunningham has developed a 6th test that appears likely to add further useful information on the neural autoimmune process.

 

Completion of all testing will cost $15,000. We already have $10,600 donated by the Sears Foundation in Mexico, MO.

 

Funding to bridge the remaining gap will enable completion of the study.The study will use the daily symptom tables to look for relationships between symptoms and intercurrent illnesses, and whether discrete symptom flare-ups are more common at first and then level off with time as some have suggested. We will attempt to determine whether any of the 6 antibodies tend to group together, and whether any antibody or combination of antibodies relate to any particular symptomor symptoms, or to the overall severity of symptoms, or even apparent responses tovarious treatments.

 

Our hope for this beginning study is that it will provide information to help inform the design of a multi-center prospective study, compelling enough to attract substantial national funding. Our collaborating group plans to meet in June to talk about how best to proceed.

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A great link to documents from past doctors presentations:

 

          http://nepandasparents.com/conferencepresentations.html

 

 

Links for additional information about PANDAS/PANS:

LINKS TO ADDITIONAL INFORMATION THAT MAY BE OF INTEREST:                

 

                                            more to come........

 

http://bastyrcenter.org/content/view/713/

http://www.smithsonianmag.com/science-nature/five-vitamins-and-supplements-are-actually-worth-taking-180949735/#ixzz2tR2r6cwF

http://www.todaysparent.com/kids/kids-health/can-strep-throat-trigger-your-childs-ocd/

http://www.cnn.com/2014/02/14/health/chemicals-children-brains/index.html?hpt=he_c2

 

 

LINKS FOR HELP AND SPECIAL SERVICES:

 

MPACT for help with 504 plans or IEP information:

                                                      http://ptimpact.org/

 

Children's Miracle Network..for help with travel, and possibly medical bills and testing:

                                                      http://childrensmiraclenetworkhospitals.org/

 

Information, resources and updates:

                                                      http://pandasnetwork.org/

 

 

 

 

 

 

 

 

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