This year, PANDAS Network has seen great progress that will begin to take shape in the coming year. Before we look ahead, let’s take a moment to reflect on some of our 2016 accomplishments: 

• A sold-out PANDAS-PANS 2016 Conference in partnership with MedStar Georgetown University 
  
• The release of Tim Sorel’s documentary film My Kid is not Crazy, Hope in the Face of Misdiagnosis that follows the journey of a handful of PANDAS families
  
• The launch of the Ripple Effect Campaign creating important new literature for PANDAS/PANS Awareness
  
• The 10 – 4 Change Campaign Fundraiser 
  
• Genoa Italy PANDAS Conference Presentations by Drs. Swedo and Agalliu
  
• PN website updates and improvements
  
• Grants to support research, including $30K to MGH for Dr. Williams MRI research of children with PANDAS
  
• Dr. Swedo at Grands Rounds in Charlotte, NC with 100+ pediatricians led by JC Konecny

We recently partnered with MedStar Georgetown University for the PANDAS-PANS 2016 Conference in Washington D.C. The sold-out event provided the latest on diagnostic and treatment guidelines, brain imaging studies, the potential role of the tonsils in the disease and integrative approaches to supporting patients and their families. Many members of our community met or reconnected with one another at this event, sharing experiences and offering examples of hope, which is a key way to strengthen our community.

The recent IVIG study included mixed results, however, there were enough significant findings regarding antibiotic use, re-exposures to infection, tonsil and adenoid issues, and raised Cunningham Panel results that further inquiry is deemed important. According to PPN, “the most significant [finding] is that children who had prophylactic antibiotics followed by an open-label IVIG had a >60% mean reduction in CYBOCS score. These symptom improvements were sustained through follow up at 6 months.”  (https://www.pandasppn.org/08- 09-2016/)  

On the heels of the conference, PN hosted a gala event at The John F. Kennedy Center for the Performing Arts featuring a preview screening of filmmaker Tim Sorrel’s powerful documentary, My Kid is not Crazy, Hope in the Face of Misdiagnosis. As many of you know, this film highlights the experiences of several families as they struggle with PANDAS or PANS. We at the PANDAS Network are proud to have supported the making of this film. The stories told in this film add to our collective voices calling for more to be done to help find treatments and a cure. We were thrilled to have many of the families and doctors featured in the film join us for this groundbreaking event. Many thanks to our sponsors and especially to Tim for his generous support and commitment to our community and specifically to this event.  The gala raised more than $30,000 which will go a long way towards advancing PANDAS Network’s mission. A third of funds raised is being allocated specifically to support of the new NIMH-supported Centers of Excellence, a network of interdisciplinary clinical and research centers throughout the U.S. that focus on PANDAS/PANS. Stay tuned for details as the roll out continues in 2017. 

We owe thanks to all who have supported us in these events, including Dr. Elizabeth Latimer, Dr. Earl H. Harley, Dr. Heidi Appel and Dr. Sue Swedo, to name a few. One person in particular who deserves our tremendous gratitude is our Executive Director, JC Konecny.

JC worked tirelessly and made personal sacrifices- including delaying knee surgery– to make these concurrent events a success. JC brought to PANDAS Network a fresh perspective and a tenacity, not just with planning and implementation of these recent events, but also helping tend to the day to day operations of our organization while caring for her own child wth PANDAS. JC has decided to step down as our Executive Director at the end of November to take time for herself and her family after a year of great progress. JC has been a very energetic and passionate leader and we look forward to her remaining an important part of our community.
 
Effective immediately, PANDAS Network founder and board member, Diana Pohlman, will serve as interim Executive Director as we transition to 2017. Just about everyone knows Diana. She is— for many people—the lifeline they found when they needed it most: an ear to listen, doctor referrals for treatment options and most importantly, hope.
 
Diana and the rest of us at PANDAS Network will continue to do everything we can in 2017 to strengthen our community, provide resources and support to our families, build alliances, spread awareness and break down the silos that exist in medical care that hinder the diagnosis and treatment of children who have PANDAS and PANS.