Susan Manfull, PhD crossed the pond to speak with Dr. Tim Ubhi, consultant paediatrician and fellow of the United Kingdom’s Royal College of Paediatrics and Child Health. Dr. Tim, as his patients call him, has dedicated his life to children’s health, beginning with conducting research on using botulinum toxin to help children with cerebral palsy, work for which he was awarded the prestigious Michael Blacow prize by the Royal College of Paediatrics and Child Health to, currently, focusing on treating children with PANDAS, work that has earned him the deepest gratitude from his over 1200 patients and their families.

Dr. Ubhi is the founder of the newly established London PANS Clinic and of the Children’s e-hospital in 2013. He is also a founding member of the UK PANS/PANDAS Physicians Network and is also a member of the Scientific and Medical Advisory Board of the European Immunopsychiatry Association (EXPAND).

Dr Ubhi talks about what drew him to pediatrics and to PANDAS and PANS, in particular. The conversation veers into some interesting history underscoring how the slow speed with which medicine changes has affected the recognition and treatment of PANDAS and PANS. And yet, he has plowed forward and opened a clinic in London and has plans to train physicians in this field in the northeast of England, collaborate with practitioners outside of the UK, and conduct research using, for example, innovative techniques such pupillometry. And more -- Dr. Ubhi is clearly making extraordinary advances in the UK.

Highly respected in his chosen field in the UK and well beyond, he is in demand to speak at conferences, including by The Alex Manfull Fund Symposium on Neuroimmune Psychiatric Disorders where he will join the Clinical Panel to address questions from physicians and other practitioners about treating persons diagnosed with PANDAS and PANS to be held on November 2, 2024 in Portsmouth, New Hampshire. (For more information, please visit: https://thealexmanfullfund.org/tamf-2024-symposium/ .)

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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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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Earl Harley, MD, FACS, FAAPS is a highly regarded pediatric otolaryngologist (Ears, Nose, and Throat doctor or ENT) at Georgetown University Medical Center and a beloved assistant professor at the Medical School. Dr. Harley is widely respected for his expertise in working with patients who have been diagnosed with PANDAS and PANS. Families travel from across the country (and well beyond) for consultations regarding adenotonsillectomies for their children suffering from these neuroimmune psychiatric disorders.

Dr Harley received his medical degree from Howard University School of Medicine in Washington, DC. He completed an internship at Walter Reed Hospital (previously named National Naval Medical Center). He did his residency in otolaryngology at Oakland Naval Hospital in California and, later, two pediatric ENT fellowships: Children’s National Medical Center and George Washington University in DC and the Massachusetts Eye and Ear Infirmary and Harvard University in Boston, Massachusetts.

At the same time, Dr Harley pursued a remarkable career of over 20 years in the U.S. Navy in various hospitals and on ships. He attributes his career as an ENT to the Navy and his work as a flight surgeon.

Susan Manfull, PhD caught up with Dr Harley just as he emerged from surgery — he had just performed a adenotonsillectomy with a patient diagnosed with PANDAS. Learn about his distinguished career spanning over 50 years and about how he came to know about PANDAS and PANS.

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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