Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders

S1 E6: The Story Behind AB2105, California's Bill to Require Insurance Coverage for PANDAS/PANS Treatment


Listen Later

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

Follow us on:
Facebook
Instagram
LinkedIn

...more
View all episodesView all episodes
Download on the App Store

Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersBy Susan Newman Manfull, PhD

  • 5
  • 5
  • 5
  • 5
  • 5

5

16 ratings


More shows like Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders

View all
TILT Parenting: Strategies, Insights, and Connection for Parents Raising Neurodivergent Children by Debbie Reber

TILT Parenting: Strategies, Insights, and Connection for Parents Raising Neurodivergent Children

967 Listeners

The Doctor Youn Show by Dr. Anthony Youn

The Doctor Youn Show

1,072 Listeners

The Dr. Hyman Show by Dr. Mark Hyman

The Dr. Hyman Show

9,199 Listeners

The 1000 Hours Outside Podcast by That Sounds Fun Network

The 1000 Hours Outside Podcast

1,899 Listeners

Raising Good Humans by Dear Media, Aliza Pressman

Raising Good Humans

1,837 Listeners

Uniquely Human: The Podcast by ART19    Uniquely Human

Uniquely Human: The Podcast

405 Listeners

The Baffling Behavior Show {Parenting after Trauma} by Robyn Gobbel

The Baffling Behavior Show {Parenting after Trauma}

224 Listeners

We Can Do Hard Things by Glennon Doyle and Audacy

We Can Do Hard Things

41,085 Listeners

The Root Cause Medicine Podcast by Rupa Health

The Root Cause Medicine Podcast

557 Listeners

Red Pill Your Healthcast by Dr. Charlie Fagenholz (@drcharliedc_2.0), Lauren Johnson (@naturalnursemomma)

Red Pill Your Healthcast

768 Listeners

The Mel Robbins Podcast by Mel Robbins

The Mel Robbins Podcast

20,649 Listeners

At Peace Parents Podcast by Casey

At Peace Parents Podcast

333 Listeners

PANS/PANDAS STORIES by Jo Joyner and Lucy McDonald

PANS/PANDAS STORIES

13 Listeners

Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Families In Crisis Mode by Podcasts By Federated Media

Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Families In Crisis Mode

9 Listeners

Mom & Doc Talk: Healing PANS/PANDAS by Resilience Naturopathic

Mom & Doc Talk: Healing PANS/PANDAS

5 Listeners