Join us in Fall 2017 as we work with parents, provider and policy makers to bring post-infectious autoimmune encephalopathies like PANS and PANDAS into clearer focus.
SEPPA's 20/20 campaign encompasses three efforts.
First, we will use social media advocacy and parent-to-parent education to educate more parents about the existence of PANS/PANDAS so they know the signs to watch for whe their children have been sick.
Second, SEPPA is collaborating with the Georgia Chapter of the American Academy of Pediatrics (GA-AAP) to inform their members about the treatment guidelines recently published in the Journal of Child and Adolescent Psychopharmacology (JCAP). The guidelines were developed by an Working Group of PANS/PANDAS experts convened by the National Insitutes of Health (NIH). The guidelines make it possible for a general pediatrican to handle almost all facets of diagnosis and treatment. GA-AAP will publish a newsletter that includes and article about the JCAP guidelines, and SEPPA will host an educational booth at GA-AAP's Fall 2017 conference.
Third, SEPPA will be working with local families affected by these conditions to hold in-district coffees with elected officials before the legislature reconvenes in January 2018. Our goals are to generate support for a legislative proclamation for a PANDAS Awareness Day in October 2018 and to develop relationships to help with future legislative activities such as the creation of a medical advisory board and passage of legislation mandating insurance coverage for appropriate therapies like extended antibiotics, IVIG, plasmapheresis and Rituximab.
Finally, our inaugural 20/20 campaign will help lay the groundwork for SEPPA to meet one of its biggest goals: faciliating the opening of an Atlanta-based NIH-designated Center of Excellence for the diagnosis and treatment of post infectious autoimmune encephalopathies by 2020.
Updates and Donors' Comments