Our Trip to the US Capitol & NIMH,
Upcoming Journal on PANDAS, & What's to Come

6/11/2014

Dear Friends of PANDAS Network,

Summer is upon us and it is a time when PANDAS/PANS is usually waning in our children. I hope you all have a great time with your families. I am reporting here on a recent trip to Washington DC to meet with the NIMH! Change is happening and we are being heard...Thank you for your support and trusting us to work on behalf of your child.

Sincerely,

Diana Pohlman

Executive Director, PANDAS Network

Board Members, Vickie Blavat & Diana Pohlman,
in Washington DC, May 2014

PANDAS Network Board Meets at NIMH

NIMH Outreach Meeting-Board of Director Attendees included Diana Pohlman, Vickie Blavat, Hayley Kamin-Flack, Amy Joy Smith, NP, Dr. Beth Latimer, and Advisor to the Board, Dr. Susan Swedo.

In May, PANDAS Network and members of the NIMH discussed the lack of recognition for this illness and the dire need families have in seeking proper, or any, treatment for their children. I am so pleased and relieved to announce that PANDASnetwork.org has been made an official member of the NIMH Outreach Partnership Program! As part of that partnership, an official plan to collaborate and develop awareness around October 9th PANDAS/PANS Awareness Day has been agreed to. We have been pushing for recognition for over seven years. This is a HUGE step forward!

The Plan: What's to Come

In the fall, an entire series of research articles will be published illuminating the science behind PANDAS/PANS. This should coincide with our October 9th PANDAS/PANS Awareness Day efforts. Along with the help of PANDAS Network, the NIMH will also launch informational videos. PANDAS Network will promote all of this material to doctors, educators, and the general public.

Thank you to Dr. Susan Swedo, Diana Morales, Director NIMH Outreach Partnership Program, Samantha Helfert, Outreach Liaison, Gemma Weiblinger, Director, Office of Constituency Relations and Public Liaison, and Jim McElroy, NIMH Public Affairs Specialist for their genuine concern.

The Doctor Consortium

Simultaneously, a closed-door meeting of many treating professionals gathered at the NIMH for a 2 to 4 day work meeting. The number of talented, treating PANDAS/PANS professionals is small but growing. Dr. Swedo and a few others invited new researchers and physicians to the NIMH to discuss controversy in treatment and how to get beyond that.

Board Member, Amy Smith, Nurse Practitioner, was invited to this meeting, and what can be said, was there was collaboration, sharing, debating, agreement and disagreement on the topics of how to heal the children. Each doctor aided in productive work on treatment and descriptive protocol papers.

A treatment guideline paper will be written next spring explaining the use of all forms of our current western medicine protocols - antibiotics, steroids, IVIG, plasmapheresis. I hope this pushes the insurance companies to pay for treatments!!

A consortium of knowledgeable PANDAS/PANS
physicians and researchers met at the NIMH in May 2014

Studies in the Works
When Will They be Published?

There are a number of important research papers that just aren't published yet and need to be! Research includes: tonsils and strep by Drs. Pat Cleary and Beth Latimer; pathways of strep and its assault on the BBB (Blood Brain Barrier) by Drs. Pat Cleary and Dritan Agalliu; and the joint NIMH-Yale IVIG Study. EACH OF THESE HAVE POSITIVE RESULTS THAT WILL HELP our children but the process of assimilating the data is excruciatingly slow. I impressed to several doctors repeatedly that WE NEED THEM WRITTEN ASAP. No one made promises to me, but at least within one year some of these papers should be out.

Genetic Evidence for PANDAS

A 2013 Turkish study shows a relation between a genetic factor and PANDAS. The researchers "propose that TNF-α−308 AA polymorphism can be regarded as a definitive and molecular indicator of PANDAS" as seen by the samples obtained form 42 Turkish children with PANDAS. To read this paper, visit:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3758727/

The correlation is already being looked at in some medical practices. This is indicated by the Stanford PANS Clinic treatment list appearing in a Bipolar Network News article, featuring Dr. Kiki Chang.

The consortium's next project is to conduct a large genetic study of PANDAS/PANS children and see other genetic subtypes. The plans are being drawn up but the project is not yet underway. We are proving step by step, this is an autoimmune illness worthy of treatment!

Financial Grants and Public Relations Attention

Grants will be submitted for several PANDAS Network projects. Also, a Public Relations company is donating their time to review our website and our public image to increase the visibility of this devastating pediatric illness.

PANDAS Network is truly a grassroots effort that is growing tremendously. There are so many factors to keep things afloat, financial, the politics of creating a new disease, exhaustion from board members AND doctors course, but no one is giving up..... we're alive and kickin"....!!

Closing Thoughts and Observations

The Doctor/Researcher Money & Time Dilemma

By Diana Pohlman

I think a lot of us get tremendously frustrated with lack of available care. Recently, I had a neighbor whose child could not get into Stanford because of a several month wait list! I am seeing that MONEY and TIME are the two things in short supply for this small cadre of sincere doctors/researchers. These doctors and researchers need MONEY to hire more staff. They need more TIME to sit together and debate the most beneficial care. They also need TIME to share it with the world medical community. Those of us living this now are paving the way for future children.

For newcomers, it is shocking to see how much needs to be done to PROVE a legitimate illness exists. In seven years we have built a strong and persistent chant stating "WE ARE HERE." 2014-15 will be huge steps forward. But we must press on..........we aren't done yet.

In This Issue

The NIMH Meeting

The Plan

The Doctor Consortium

The Studies in the Works

The Genetic Evidence

The Future of Grants and PR

Closing Thoughts

Quick Links

Website

Support Groups
Provider List

Board of Directors

Diana Pohlman

Vickie Blavat

Dr. Beth Latimer

Amy Smith, NP, MS

Maggie Gold-Seelig, Esq.

Cathy Witkos

Hayley Kamin Flack

Advisor to the Board:

Dr. Susan Swedo