August 2017
PANDAS-PANS $200K Research
IMPACT
OCT 9th Awareness Day & Beyond
PANDAS-PANS & AE awareness began in earnest in 2013 when PN was founded. Our Board of Directors recognizes we must UP THE EFFORT to gain acceptance. This October each of your efforts big or small REALLY DO MATTER!
PN is regrouping and broadening our vision with our Community Partners ( link here ), expanding our Advisory Board including Spring 2018 a PANDAS-PANS-AE Conference at Columbia Univ (New York) Dr. Agalliu’s lab ( link here ) (date nearly decided mid March/early April). 
 
As we work to align national/community goals we will aim to work smarter and faster to raise money and clarify our message. The JCAP and its guidelines are making a dent in the politics of medicine (and IVIG coverage, etc). But, honestly, raising research money and proving mechansims is paramount.   Awareness begets funding, so THANK YOU for keeping raising up your voices.

In honor of October Awareness more frequent newsletters will follow to explain upcoming research and national and international efforts. Encephalitis in all its forms are studied far too little -- we aim to change that. 

With Appreciation for this Community – Diana Pohlman, Founder & Ex. Dir. PNetwork
Oct 9th PANDAS PANS Awareness Day & National OCD Awareness Week
Help us fill it in! Your state! Read here how to write the letter! EACH STATE filled in makes legislators ponder and want to "join" us. I have seen California State officials pause when seeing this map and say, "Wow, okay such-n-such a state is recognizing pandas? When? Why? Should I help?" IT REALLY Shows our credible efforts and opens an easy path to dialogue. Let us know at pandasnetwork@gmail.com if you can help out with your state.

Below is our shortlist of fundraising efforts developing across the U.S. Thank you community!!


Let us know about your event – big or small 😊
RESEARCH $200K in Research Grants since 2014
Since 2014 your donations came in a wide range of amounts. Every penny is a blessing fin launching this "new disease model." You keep the website up and allow us to create conferences, fly doctors to events, and assist with “micro grants” for research whose results ripple out to affect change.

Your gifts helped allow doctors attend the first meeting of the Consortium in 2014. We know there are a lot of unmet needs. We receive these calls and email daily BUT REFLECT on how far we have come in 3 years. We are determined to go into ORGANIZED HYPERSPEED in 2018 and pull in more consensus, awareness and, yes, research funding.

Here is a small list of areas your money helped fund (for more info see our website link here ):

     How Epigenetics (our DNA) shifts with mood & infection
   How M-1 Strep Ignites Misbehaving Autoimmune Cells (t-cell 17) and crosses into the BBB
    Potential Genetics of PANDAS & Sydenham Chorea
    How Dopamine 1 & 2 auto-antibodies are activated by infection in the brain
    Cunningham Panel results analysis
   Tonsil bacteriology and its impact on the BBB
    Survey of 700 families and the impact of PANDAS-PANS treatment on lives (pending publication)

Since 2014 we have spent $85K on conferences - flying doctors here and there, staffing, literature, renting of conference spaces, etc. We always make our money back but we need funds to initiate these events. Thank YOU!

Researchers, doctors and parents reach out to us continually for grant funding. WE HEAR YOU! and in 2018 WE DETERMINE TO HAVE COURAGE, BE STEADY LIKE FLOWING WATER and DO MORE to Ensure a Solid Future for Our Chidlren!
Kick-it-to-the-Curb! Fun”raiser” OCTOBER AWARENESS TIME
This is a fun and simple way to explain that PANDAS-PANS-AE needs to be kicked from the list of childhood diseases! This is a FUN WAY to fundraise at school or anywhere you can imagine!

Our favorite PANDAS book, “In a Pickle Over PANDAS” inspired artist, T. Barnett to create the four poses of the "kicking pandas" for this fundraiser.

UTILIZE THESE IMAGES in any way you can manage! Try downloading the poster and 4 pandas poses pdf’s below. Mount the poster on a wall at a store, school, church, party – and “sell” a panda for $1, $5 or $10 or more per panda. Put the donor’s name on the belly and lay this out with brochures and awareness material. Print up black and white versions of the pandas and scene and offer them as a "Gift" to donors and their children.

We hope you ENJOY – spread the PANDAS around! Let’s tell the world this is real and our kiddos – deserve a chance to KICK THIS ILLNESS TO THE CURB!