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)
