PANDAS Network  
September 23, 2014 

October 9th is PANDAS/PANS Awareness Day and PANDAS Network is making efforts to allow researchers to continue work on an illness that can change the course of psychiatry as we know it. The consortium is working on the final edits of documents soon to be published identifying the onset and needed treatment for our children. This soon to be announced publication will make 2015 a groundbreaking year for all of us. It may stir up controversy, but the discussions will be launched.

In this newsletter, learn about the newest research that has been completed along with a PANDAS/PANS summary review by Dr. Tanya Murphy and colleagues. Also, find out how you can help make new research available to further help our children.

Thank you for your continuing support!

With Sincere Appreciation,
The PANDAS Network Team

Studies you should know and
tell others about!
Genes and PANDAS - Why should we care?

PANDAS has been found to often show up in family lineage. Identifying the root cause of this syndrome is pivotal for our children's future and grandchildren's future. Efforts are being made to house a genetic database for PANDAS-PANS children. Treatments can be targeted and administered immediately at onset if physicians are confident about the underlying reasons for a PANDAS-PANS onset. 


A small study of 38 children of Turkish descent identified a gene many nationalities carry. This TNF-a gene has been found to be related to many autoimmune diseases. When this gene is present, a child's immature immune system is even more likely to overreact during an infection. 


The research states: "...the most compelling aspect of our research is the finding that TNF-a -308 ...polymorphysim was detected in 86.5% of (PANDAS) patients but not in controls..." Indian J Hum Genet, 2013 Apr-Jun: 19(2): 196-201 


They also point out that damage to the psychiatric well being of children may increase if treatment is not administered. This gene rests on a "fragile site" in a chromosomal region which likely increases susceptibility issues to autoimmune illness.


PANDAS Network is attempting to reach these researchers in hopes they will collaborate with U.S. doctors.



To learn more about the TNF-a gene, visit


Experimental PET scans proves inflammation in PANDAS kids - Why should we care?
PET scan of the human brain.

Our goal has been to show that our kids deserve PAID, INSURED treatment! The recent award-winning study of the basal ganglia and PANDAS and Tourettes kids by Wayne State University Drs. Kumar, Williams, and Chugani, Journal of Child Neurology 1-8 (2014), is compelling proof of neuro-inflammation in affected children. Show this to doctors and legislators!


This basal ganglia study shows that both syndromes are immune-inflammatory reactions. With PANDAS - a strep infection was clear. With Tourettes - unfortunately, the infection was not identified for the purposes of this study.




The PET scans showed there was a decline in "bad stuff binding to the brain", the basal ganglia, with immune-modulating treatment! In this case, IVIG was used. It also showed that this "bad binding" declined with age of the child for PANDAS children. The caudate and lentiform nuclei were found to be enlarged. " contrast to volume loss seen in OCD patients, and it is more consistent with basal ganglia changes (increased volume) seen in patients with Sydenham chorea, an autoimmune condition also related to streptococcal infections."


We are in touch with Dr. Chugani at Wayne State and his team is willing to do more research for PANDAS - but again - research dollars are needed.  

New, Updated PANDAS/PANS Summary and Review Paper
The PANDAS Controversy: Why (and How) Is It Still Unsettled?
Dr. Tanya Murphy has published multiple papers on PANDAS and PANS, including review articles that lay out the history and most updated information regarding these disorders. The last summary was completed in 2010's "The Immunobiology of Tourettes Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus,and Related Disorders:A Way Forward".

Over the course of the last four years, a good portion of information has remained the same, however, growing research has emerged along with the addition of PANS.  We welcome the new summary and review, "The PANDAS Controversy: Why (and How) Is It Still Unsettled?" by Drs. Tanya Murphy, Diana Gerardi, and E. Carla Parker-Athill. This paper was published in August 2014's "Current Developmental Disorders Reports".

Review papers are good items to present to a provider. They provide a lot of information all in one place.

Find the entire paper for FREE at:

Help Continue PANDAS/PANS Research

You just read about what amazing discoveries have been made, now it's your turn to make sure research into PANDAS and PANS continues!

Read about the fundraising opportunity on the right side of this newsletter and see how you can designate your raised funds to the PANDAS Network Research Fund!





Thank you to the 22 fundraising pages that have been set up on FirstGiving! Remember, you can choose to donate your raised funds to RESEARCH and/or PANDAS NETWORK. Learn more about how to designate your page here.

If you are interested in setting up a FirstGiving fundraising page or learning more about the great causes already listed, please visit:



Events are popping up all over the country! Click on each event to learn more. We hope to have a great turn out and show that our community is strong and united!

Menlo Park, CA - Awareness Day Celebration at Sharon Park

Greenly, CO - Pumpkins and PANDAS

Hartford, CT - Hockey Fundraiser

Bethesda, MD - Pedal for PANDAS


Portage, MI -City of Portage Council Meeting

Staten Island, NY - Press Conference

Cincinnati, OH - PANDAS/PANS Awareness Walk

We are constantly updating our event page. Keep checking back at:



Nearly half the United States has taken action in proclaiming October 9, 2014 PANDAS/PANS Awareness Day!

As of September 23, 2014, 15 states have proclamations approved and 18 states have proclamations still being processed

Thank you, everyone, for your hard work!

Please SUPPORT PANDAS NETWORK and help us continue our mission of improving the diagnosis and treatment of children with PANDAS and PANS!
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