PANDAS Network Newsletter - July 2019
Medical Professionals Only CME Units Oct 5, Sat Georgetown MedStar

General Public - Families Day Oct 6, Sun
  • Important Review of Treatment Guidelines and latest trends in immune mechanisms and treatment therapies. Faculty is listed. Agenda will be posted shortly.

  • Parents and community welcome to attend Day 2 with a free special Saturday evening meditation, reflection and friendship gathering. PDF of Day 2 event is available on the website for distribution and shariing.

  • Please email with questions.
New Hampshire Governor Sununu Signs PANDAS, PANS, AE Insurance Mandate Bill (SB 224)
The below is written by Susan Manfull, PhD whose daughter was afflicted by PANDAS (Alex, pictured above). The Alex Manfull Memorial Fund has been created by the Manfull's to further research and awareness for young adults stricken by PANDAS/PANS/AE.

HUGE NEWS for children and young adults with PANDAS, PANS, and other autoimmune encephalitis disorders: New Hampshire Governor Sununu has just signed a bill (SB 224) requiring insurance coverage of treatment for pediatric autoimmune neuropsychiatric disorders, including the use of intravenous immunoglobulin therapy when ordered by a physician.

This was a bipartisan effort, and Towny and I are grateful to the sponsors and champions of this bill in the New Hampshire House and Senate, to all those who testified on its behalf (including parents who have worked for several years to make this happen), and to Governor Sununu.

I am also indebted to PANDAS Network, Dr. Beth Latimer, Dr. Dritan Agalliu, and Dr. Kyle Williams who assisted me on the medical side of PANDAS for the preparation of my testimony in support of SB 224 before the House Commerce Committee. Now five states have mandated coverage: Arkansas, Delaware, Illinois, Minnesota & New Hampshire.

Before PANDAS stole the life of our 26-year-old daughter Alex, she told me she wanted to write about these autoimmune neurological disorders so that no one else would have to suffer as long as she did. Alex died before she could do that, so Towny and I, along with a growing number of people, are doing the best we can to get the word out there.

My testimony was a start -- I know Alex was with me as I spoke.
A Mother's Reflections of Gratitude in the Midst of PANS Struggle
This is the First in a Continuing Series of anonymous paragraphs written by parents. Each writer received a copy of Heather Korbmacher's book What Happened to My Child. This is one of many many efforts each of us make to broaden awareness and empathy......thank you. All forms of encephalitis are greatly underserved - let's press on for all forms of encephalitis and bravely state our truth.

3 weeks after my son (age and year of onset not given ) took an overdose (aiming to end his life) and he "tipped' overnight, moving to live under a table in his room, constantly haunted by intrusive suicidal thoughts, not talking, not eating, severely anxious when separated from us and withdrawn from function, I came across the statement POST TRAUMATIC GROWTH.

I knew as a mother, as parents and as a family we were swept up into a distressing and traumatic episode that would define our lives. So my husband and I gathered our family and explained the choice we had in how we responded to this. That we could choose post traumatic stress or post traumatic growth.

That we could, when our emotions were tamed, see this as an opportunity to practice patience and acceptance and kindness and humility and compassion in a way you never would, without such a stimulus.

So I have cried and been traumatized and I continuously fear for my sons safety and ability to recover. HOWEVER, this is only sometimes . Because I committed to choosing my pathway through this nightmare, very early on. As the mother, I decided to lead the way and show the responses possible through such distress.

My son remains mostly non- functional 10 months on and so I have had a sustained and continuous reminder to work on my responses, to be the kindest and most compassionate mother and wife I can be and to connect with a safe and strong space inside of me that cannot be touched by this. Over the months, my strength has remained steady - small and distant but constant. I can feel it growing weekly. I have noticed I can distance myself, observe behaviour, filter this with context and respond more lovingly.

The warrior in me is unyielding. And now there is a hint of movement - maybe its a rhythm. I will become a dancing warrior and I will progress the personal transformation at hand. I will NEVER be given a greater stimulus, with such sustained vengeance and fire, to drive me to be the best version of myself possible .

For my magnificent son and the rest of the family, I CHOOSE TO BE THEIR DANCING WARRIOR.


Dedicated to improving the diagnosis and treatment of children with PANDAS and PANS