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Vickie

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Everything posted by Vickie

  1. Thought I'd post an update on which states have submitted applications for an Awareness Day and who has been approved. If anyone is interested in still applying, you may be cutting it close for a STATE proclamation, but CITIES do them as well. The city proclamations get processed much quicker, sometimes as fast as 24 hours. In case my photo doesn't come up... New York – Approved Illinois – Approved Texas – Approved Missouri – Approved Nevada – Approved North Carolina – Approved Kentucky: Louisville, KY - Approved , Lexington – Approved Wisconsin – Approved Maryland – Approved Tennessee – Approved Arkansas - Approved Washington DC Arizona Michigan Rhode Island Virginia Washington UK Minnesota Georgia Louisiana Florida Pennsylvania Ohio Connecticut Maine Indiana
  2. For those who may be interested... http://myemail.constantcontact.com/Count-Yourself-In--Be-Part-of-the-PANDAS-PANS-Movement-.html?soid=1103470649803&aid=7V3cVvGYVeA
  3. The price is per person. In order to register, once you pull up the page https://squareup.com/market/ne-pans-slash-pandas-parents-association hover over what you want, click, and an "add to cart" button should open in a new page. If this is not happening for you, I would contact the NE PANS/PANS Parents Association at info@nepandasparents.com.
  4. Today's PANDAS Network.org newsletter provides information on the NE PANS/PANDAS Conference, including speaker list, cost, and how to register! http://myemail.constantcontact.com/Registration-Now-Open-for-NE-PANS-PANDAS-Conference-.html?soid=1103470649803&aid=Qvh9RP1aZkA
  5. For those that may be interested, here's the latest PANDAS Network.org Newsletter. It includes the Story Behind the NY Awareness Day, IVIG study closing, how to donate to Dr. Agalliu's research, etc. Newsletter link: http://myemail.constantcontact.com/NY-Proclaims-Oct-9th-PANDAS-AWARENESS-DAY--IVIG-Study-Closed----More.html?soid=1103470649803&aid=8PEPnRKbVoQ
  6. Please represent PANDAS on Rare Disease Day 2013! Information for how you can get involved in "Handprints Across America" can be found here. Simply print off the Rare Disease Day logo and take a picture of yourself holding it up. Be sure to mention PANDAS in the caption you will be asked to provide! Hand Across America link: http://rarediseaseda...merica-gallery/
  7. Just letting the group know that PANDASnetwork.org is now listed on NORD (National Organization for Rare Diseases) http://rarediseases.org/rare-disease-information/organizations/viewIndex?tab=P
  8. http://myemail.const...aid=Rx41K4u0fuw Only 5 more participants are needed to complete the PANDAS IVIG study! The NIMH is seeking new onset cases (within the last year) with a strep connection. To find out if your child qualifies or for more information, please contact one of the following: Rachel Kushner at Yale (203)-737-5588 or email Rachel.Kuschner@yale.edu Lorraine Lougee at NIH (301) 435-6652 or email lougeel@mail.nih.gov Dr. Paul Grant PaulGrant@mail.nih.gov More information on the study can be found by visiting:http://clinicaltrial...how/NCT01281969
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