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Welcome to the PandasNetwork.org Newsletter
April 1st, 2012

Dear Parents,

 

Springtime is here and with that comes thoughts of rebirth, renewal and regrowth. That is exactly what is happening in the world of PANDAS. A surge of articles have surfaced spanning from the now available to buy, April issue of Parents magazine featuring PANDAS tothe NIMH press release which has been picked up by numerous media outlets. PANDAS Network.org urges everyone to take advantage of this coverage and keep up the momentum of spreading awareness. We need to continue educating the public and each other. Communication between parents, between physicians, and between researchers is imperative! What each of us learns needs to be shared so more children have the opportunity to recover.
 
Thank you to everyone for your continued support!
Best Wishes,
Diana Pohlman, Vickie Blavat, and PANDAS Network.org Volunteers
PANDAS Parent Symposium in
Northern California
April 28th, 2012
 

 

 

The Bay Area PANDAS Parents Symposium is quickly approaching! It will take place on April 28, 2012. Registration is still open.
 
PANDAS Network.org introduced researcher Dr. Dritan Agalliu, Neuroscientist at UC Irvine, California to the organizers and are happy to announce he will be speaking at the event! Dr. Agalliu is the ONLY researcher to study the Blood Brain Barrier and PANDAS. He will give an overview of what his study entails (no results can be disclosed). This is very exciting! In additon to Dr. Agalliu, the event has an impressive speaker list that can be found on their website pandasparentsymposium.blogspot.com.
  
DISCUSSION TOPICS AT THE SYMPOSIUM:
PANDAS and PANS-What does the new White Paper mean? 
Research 
Treatments and Trends 
Advocating for our children 
Impact on the Family 
Teens and Young Adults with PANDAS  
And more!
  
HOTEL INFORMATION:  
April 7th is the cut off for the room block. Organizers recommend attendees book their hotel room now. After April 7, the blocked rooms become available to the public and many events are taking place that weeked. If you wait too long, the rooms may be gone. Terms and conditions state you can cancel the hotel room up to 24 hours in advance. The discounted rate is $119/night.
 
HAVE YOUR CHILD HONORED AT THE SYMPOSIUM:
PANDAS Parents Symposium is creating a collage of (anonymous) photos and artwork of PANDAS children to be displayed at the event. If you would like to have your child included, please send the images to PandasSymposium@gmail.com. You do not have to attend the Symposium to partcipate.
 
Visit the website pandasparentsymposium.blogspot.com for more information.
NIMH Issues Press Release and Blog Post on PANDAS 

  

The NIMH has been busy lately bringing attention to PANDAS and PANS. It's most recent endeavors is the press release, Possible causes of sudden onset OCD in kids broadened, and the blog post, From Paresis to PANDAS & PANS, from Director Dr. Thomas Insel.

 

Both the press release and blog post introduce the newly proposed syndrome PANS (Pediatric Acute-onset Neuropsychiatric Syndromes) and elaborates on theactive NIMH IVIG study for PANDAS. They state that the hope is "as the field moves toward agreement on this broadened syndrome, affected youth will be more likely to receive appropriate care, regardless of whether they are seen by a neurologist, pediatrician or child psychiatrist."

 

To read the press release, please visit: http://www.nih.gov/news/health/mar2012/nimh-22.htm.

 

To read Dr. Tom Insel's blog post, please visit: http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-pans.shtml.

 

 

 

 

 

Drs. Swedo, Leckman, and more to Speak at Pediatric Academic Societies Meeting
 
 
Progressing from PANDAS and PITAND to PANS will be presented by Dr. Swedo, Leckman, Cunningham, and Hornig at the PAS Annual Meeting.
 
This 2 hour presentation will take place on Tuesday, May 1.
  
7,000+ pediatricians, research scientists, health care providers, and policy makers, including over 1,200 international attendees, attended the 2011 PAS Meeting. We hope the presentations will make a positive impact on those attending.
  
 More information on the PAS Meeting itinerary can be found here.

Treating Physician List Now Available

 

 A selective Treating Physician List has been added to the PANDAS Network.org website! Please visit it under the RESOURCE section.
Let's not forget it is all our voices that is making this awareness happen. Every parent has worked hard for this....... we'll just keep pushing.

 

Thank you for your continuing support, 

PandasNetwork.org
In This Issue
PANDAS Parent Symposium
NIMH Issues Press Release
Pediatric Academic Societies Meeting
Treating Physician List
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