PANDAS Network .org Newsletter
Awareness Day Edition: Press Release, the AAP, Proclamations & More!
October 1, 2013
In This Issue
Awareness Day Press Release
Swedo Debates PANDAS at AAP
GLOBAL efforts to raise awareness is underway!
Community Action: How YOU can Raise Awareness
Sign the Petition to the White House!
Important Links
Awareness day

PANDAS Network .org is excited to release this special edition of our newsletter devoted to PANDAS/PITAND/PANS Awareness Day on October 9, 2013!

In June, we announced that New York was the first state to proclaim October 9, 2013 as PANDASPITAND/PANS Awareness Day. Since then, we've had numerous states, cities and countries follow suit and apply in their area!

Around the world, one can hear a global plea for awareness and advocacy. You have outdone yourself. Thank you for making a difference!

In the spirit of promoting awareness, we are pleased to announce the growth of our Board of Directors with Dr. Sue Swedo, as Advisor to the Board and Dr. Beth Latimer as a Director.  Next month, we will give you more details about development efforts to raise awareness.

Diana Pohlman, Excecutive Director, Vickie Blavat, Director,
and the PANDAS Network .org Volunteers
PANDAS Network .org Awareness Day Press Release
Please read and share the PANDAS Network .org Awareness Day press release. We strongly encourage you to not only share this with your local news outlets, but also with your school, physicians, and family. 

Access the press release via WEBPAGE or PDF.

Contact: PANDAS Network .org


Menlo Park, California ---------October 9, 2013 marks the first PANDAS/PANS Awareness Day. Multiple states have officially proclaimed this day of awareness and acknowledged the need for educating the public and medical community about this autoimmune disorder. PANDAS  

Network .org is urging the public to help children be correctly diagnosed, have the opportunity to be treated, and put an end to unnecessary suffering. These devastating syndromes can no longer be ignored.     


PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndromes) are devastating syndromes that are likely as prevalent as Pediatric Cancer and Pediatric Diabetes, yet awareness and education is scarce. Strep, walking pneumonia, viruses, Lyme, and other infections can trigger an autoimmune reaction resulting in inflammation on a child's brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more. These infections are often asymptomatic and go undetected. The autoimmune reaction can be stopped and symptoms are able to completely remit, but DIAGNOSIS and TREATMENT are necessary for this to happen.


According to the CDC, "It is estimated that 13 -20 percent of children living in the United States (up to 1 out of 5 children) experience a mental disorder in a given year." ( Finding out the root cause for these symptoms is imperative. If the onset is a result of PANDAS/PANS, a child can possibly be saved from a lifetime of suffering.


This year, President Obama launched the BRAIN Initiative with the National Institute of Health. Research and awareness of PANDAS/PANS can be the gateway into new discoveries involving the Blood Brain Barrier and disorders involving the brain, including Alzheimer's, Parkinson's, and Multiple Sclerosis.


PANDAS Network .org ( is a 501c3 non-profit corporation dedicated to improving the diagnosis and treatment of children with PANDAS/PANS. Armed with an impressive network of doctors, researchers and scientists, PANDAS strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS/PANS. PANDAS Network .org is a NIMH National Partner, a NORD Patient Organization, and a member of the AARDA's National Coalition of Autoimmune Patient Groups.





Click here for a PDF version of this press release. 

Dr. Swedo Debates PANDAS/PANS at the AAP

Dr. Swedo is raising awareness about PANDAS/PANS at the upcoming National American Academy of Pediatrics (AAP) Conference!

A debate between Dr. Susan Swedo and Dr. Don Gilbert will take place on October 27 from 4-5pm at the AAP NCE (National Convention and Exhibition) meeting in Orlando , FL. The debate is titled,
"Kung Fu PANDAS: Stealth Attacks of Streptococci?"   


This American Academy of Pediatrics debate will also be featured in the AAP News. Each day of the conference will feature a printed news article on PANDAS/PANS. The articles will be available via link to ALL pediatricians.



When sending out your Awareness Day literature,  

please inform pediatricians about this important debate!   


GLOBAL Efforts to Raise Awareness is Underway!
We have had parents from across the world apply for an Awareness Day or similar in their area. Here is the round up of requests and proclamations:
Those with submitted applications and approved proclamations are: 
  • New York - Approved     
  • Illinois - Approved
  • Texas - Approved
  • Missouri - Approved
  • Nevada - Approved
  • North Carolina - Approved
  • Kentucky: Louisville & Lexington - Approved
  • Wisconsin - Approved
  • Maryland - Approved
  • Tennessee - Approved
  • Arkansas - Approved
  • Maine - Approved
  • Connecticut - Approved
  • Ohio: Cincinnati - Approved  
  • Virginia - Approved
  • Italy - Approved   
  • Washington DC
  • Arizona
  • Michigan
  • Rhode Island
  • Washington
  • UK - determining how to apply
  • Minnesota
  • Georgia
  • Louisiana
  • Florida
  • Pennsylvania
  • Indiana 


Thank you to EVERYONE  

for making this a success!


Community Action: How YOU can Raise Awareness
Whether you have an official day proclaimed or not, you can do your part to create awareness and educate the public on PANDAS, PITAND, and PANS.

PANDAS Network .org has tried to make your advocacy efforts as easy as possible by creating tools to help you.


Advocacy Tools:

      Visit to find


Where can you create awareness?  

  • Schools - Schools are a popular place that parents are choosing to bring their Awareness Day efforts to. Suggestions include: Offering to speak to the staff, posting a flyer in the teacher's lounge, having students get involved by wearing a certain color.   
  • Libraries and coffee shops - Often these locations will have community bulletin boards to display flyers.   
  • Pharmacies -  A lot of parents have developed friendships with the pharmacists on staff. Ask them to post the flyer for at least one day.
  • Pediatrician offices - Create a packet to provide to your pediatrician's office. It can include flyers, handouts, and a reminder of the upcoming AAP Conference that will feature the debate between Drs. Swedo and Gilbert. Find out more information on that debate at
  • Local news outlets


Retrospective Survey:  


You can also do your part by taking the Retrospective Survey. We need a snap shot of our community of children in any stage of illness or recovery.  This survey will be published and it will move the hearts and minds of the medical community.  350 children are registered thus far.  There are hundreds more!  Please fill out the survey! 


View the official survey invitation at : .


Sign the Petition to the White House!
Parents are wanting to take PANDAS/PITAND/PANS Awareness Day to a whole new level...the national level that is!

Parent, Tabitha R., has started a petition to the White House to establish a National PANDAS/PITAND/PANS Awareness Day. Please show you support and sign the petition.
It is easy to do and your name is anonymous. Only your first and last initials will appear.

Find the petition at: 
White House Petition 
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