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Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
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S1 E6: The Story Behind AB2105, California's Bill to Require Insurance Coverage for PANDAS/PANS Treatment
Manage episode 436154105 series 3567249
Contenuto fornito da Susan Newman Manfull, PhD and Susan Newman Manfull. Tutti i contenuti dei podcast, inclusi episodi, grafica e descrizioni dei podcast, vengono caricati e forniti direttamente da Susan Newman Manfull, PhD and Susan Newman Manfull o dal partner della piattaforma podcast. Se ritieni che qualcuno stia utilizzando la tua opera protetta da copyright senza la tua autorizzazione, puoi seguire la procedura descritta qui https://it.player.fm/legal.
In this episode of Untangling PANDAS & PANS, Susan Manfull, PhD talks with April Ronay, founder of California Coalition for PANS/PANDAS (aka, Cal-Coalition), and Shari Strulson, one of the founding members of Cal-Coalition. Both are teachers, by profession, both have a family member with PANS, and both are tirelessly working to pass legislation in California to require insurance companies to provide coverage for doctor-prescribed treatments for PANDAS and PANS. They are currently working to pass AB2105, a bill sponsored by Assembly member Josh Lowenthal.
April is a second-grade teacher from Long Beach, California. Shari is a former fourth-grade and enrichment teacher in Bridgeport, Connecticut who currently resides in Redondo Beach, California.
The PANDAS/PANS community is a remarkably close community. Comprised of patients, family members, advocates, policy makers, researchers, and practitioners, this hybrid virtual and in-person community extends across the United States and into many other countries around the world. PANDAS/PANS can be such an excruciatingly debilitating disorder that supportive relationships are easily engendered among care-takers whose care-burden demands often exceed those of Alzheimer’s disease. Many wear multiple hats. Untangling PANDAS & PANS cover all members of this intertwined community.
What drives April and Shari -- who wear parent and advocate hats -- to take on the huge task of passing legislation for the benefit of all?
Hear their stories on this podcast episode. Meet them (and many other families and advocates) on Advocacy Day in Long Beach, California on September 14, 2024 (9:00 a.m. to 12:00 p.m.).
Eventbrite Advocacy Day Agenda:
https://bit.ly/PANS_PANDAS_Advocacy_Day
To send a letter of support to Governor Gavin Newsom (once the bill is on his desk), go to https://www.gov.ca.gov/contact/ for online submission or mail to
Governor Gavin Newsom
1021 O Street, Suite 9000
Sacramento, CA 95814
For more information about Cal-Coalition, visit www.calcoalition.com and follow on Facebook@CalCoalition-for-PansPandas-Advocacy (other social media handles on website).
Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.
Credits: Music by Kingsley Durant from his "Convertible" album
To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org
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