PANDAS Network Newsletter - October 2020
October 9th Awareness Since 2013
Science Moves PANDAS/PANS
Closer Towards Autoimmune Encephalitis Diagnosis
CONGRATULATIONS! Parents and All PANDAS/PANS Advocates!

OUR MOVEMENT TO LEGISLATE TREATMENT BEGAN in 2013. Oct 9th Awareness Day was the inspiration of one New York Assemblywoman, Nicole Malliotakis. Her goal was to honor the life of a young man impacted by P/P in NY. The Awareness Day concept spread instantly when PN asked parents to participate nationally. READ THE STORY HERE

WHY IS THIS MAP IMPORTANT? PN Board members sat with a California State Senator in 2013 and showed him "the map" and he said with astonishment, "Why do other states know about PANDAS/PANS and I do not?" Ultimately, we found the map has been a simple way to invite lively discussion and it continues to do so. Today, despite this pandemic, a representative parent has mailed in a request throughout much of the U.S. Seven states have mandated insurance. In 2021, several more states will push for INSURANCE COVERAGE (Kentucky, Indiana, Ohio, Texas, Minnesota, and others). This MAP OF UNITY helps elevate the conversation. IT GIVES US ALL HOPE & POWER!

The American Academy of Pediatrics does not yet openly recognized P/P. PN is working on laying out evidence that can help move P/P to Autoimmune Encephalitis aka a brain inflammatory process. This is a critical step for recognition . We will keep you posted on progress. For a review of the basic science read the Yale U Paper and view our Columbia U Video. SCIENCE continues to develop and the excellent 2021 Univ. of Arizona - Octapharma IVIG Study will be a big step towards expanding this vital work. The PACE Foundation, an advocacy group, affiliated with U of AZ helped make this a dream come true.

You, together with your children, and our dedicated practitioners are changing medicine for generations to come. Tell your children that as we work together even "small" steps make mountains. It's really true. We thank you from the bottom of our hearts for your steadfast and hard fought efforts.

Gratefully, The PANDAS Network Board and Team of Volunteers (11 years of advocacy)
YOGA 6:30PM est Tonight Last Chance! Proceeds Go to our Research Funda
Together we can do it for PANDAS and PANS!
#ididitforpandaspans
@pandasnetworkofficial
 
COMMUNITY EVENT FOSTERING PEACE & FRIENDSHIP
Led by Jordana Jaffe at the Hudson Yoga Project. A friend to a PANDAS Mom seeks to give relief and support to her dear friend through this event.

Monday, October 5, 2020
6:30 pm – 7:30 pm est
All Ages, All Levels *modifications for expecting mothers and kids!


INSTRUCTIONS: Login / New Users Create an Account 
Click ENROLLMENTS TAB, scroll for PANDAS Event
Livestream Link to be sent 15 minutes prior to class

 **The $23 class fee is used to benefit PANDAS Network
Any additional donations may be made via First Giving here.
Can’t join the class? No problem! When you sign up a LiveStream Link will be sent so you can load the class anytime anywhere.
Contact Jordana directly if there are issues with your registration: jtjaffe@gmail.com
ATTEND VIRTUAL AWARENESS EVENTS Massachusetts and Oregon
Massachusetts LIVE EVENT
What? Live Legislation Event and Personal Testimonies

When? Friday, OCT 9th, 11am to Noon Est LIVE VIRUTAL EVENT New England (@NEPANS)
Where? NEPANS Facebook page (Click on this link)

Who? Senator Julian Cyr of MA, sponsor of the current Senate Bill for Coverage. And,
Dr. Susan Manfull speaking on the loss of her child to PANDAS. As well as testimony of two young adults currently fighting to heal. Access to care is our goal and our mandate.

OREGON LIVE EVENT
What? Livestream: Dr. Kiki Chang, Psychiatry, co-founder of Stanford PANS Clinic

When? Tuesday, 10/06/2020 12am Pst (free no cost event; Click on link below)
Please view the NWPPN Awareness Week Agenda in Oregon& Washington - A walk for awareness, March to the OR Capital on October 9th, Presentation of PANDAS at Univ. of WA, Free Screening of Stolen Childhood Film at the Oregon Health & Sciences University (OHSU) Hospital Campus and more.

Thank you NEPANS and NWPPN for your inspiring advocacy!
NorthWest Advocates Stand Together at the Oregon State Capital to Advance Treatment & Diagnosis

Margaret Mead: "Never doubt that a small group of thoughtful committed individuals can change the world. In fact, it's the only thing that ever has." (photo from 2019)
Dedicated to improving the diagnosis and treatment of children with PANDAS and PANS