By Susan Newman Manfull, PhD
Hello and welcome to Untangling PANDAS & PANS, a podcast about two relatively unknown medical disorders characterized by the sudden and dramatic onset of obsessions and compulsions, vocal or mo
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The podcast currently has 10 episodes available.
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
Follow us on:
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M. Elizabeth “Beth” Latimer, MD is a pioneer in the field of autoimmune encephalitis and is known across the country and in Europe for her expertise in treating PANDAS and PANS. She received her medical degree from Tufts University School of Medicine in Boston, Massachusetts. She completed her residencies in Pediatrics and Neurology at Walter Reed Army Medical Center in Washington, DC with special certification in Child Neurology. She served as chief of the Child Neurology Division at Georgetown University Hospital in Washington, DC for five years, prior to practicing at Fairfax Hospital in Virginia, and then to opening her own practice in Child and Adolescent Neurology in 2000 in Bethesda, Maryland. Currently, Dr. Latimer’s private practice is in Washington, DC, in general neurology with a specialization in caring for patients with PANDAS and PANS.
Dr. Latimer is one of the few physicians in this field who has long worked with adult patients, recognizing that post-pubescent individuals could continue to suffer from PANDAS/PANS and that onset could first manifest after puberty.
Susan Manfull, PhD sits down with Dr. Latimer over cheese and crackers and sparkling water on a hot afternoon on Cape Cod. They discuss Dr. Latimer’s career in pediatric neurology, highly respected work that has spanned nearly forty years dedicated to treating patients in a field that still struggles to find a name. Whatever the field be called, Dr. Latimer’s name will certainly have a place in its history and in the hearts of many families.
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:
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Instagram
Dr. Shannon Delaney, a psychiatrist with expertise in PANDAS/PANS, Lyme, and other vector-borne diseases, talks with Susan Manfull about how these complex disorders present in children and adults. Much of what she came to learn about Lyme came from her work with Dr. Brian Fallon at Columbia University.
After her residency at Harvard Longwood Psychiatry Residency Program, she moved to New York-Presbyterian/Weill Cornell Medical Center and Presbyterian/Columbia University Irving Medical Center and, eventually, rose to become the Director of Child and Adolescent Evaluation at the Lyme and Tick-Borne Disease Research Center at Columbia University. Currently, Dr. Delaney has a private practice in New York City.
Dr. Delaney's work falls into the relatively new and emerging field of immunopsychiatry in which psychiatric disorders are viewed through a lens that examines the role of infections and the immune system in the development of neuropsychiatric symptoms.
Learn what initial professional experiences led Dr. Delaney to become what might be described as a "medical detective."
Episode 3 is divided into three parts: 1) Introduction and overview of tick-borne diseases; 2) diagnosis and treatment; and 3) a description of her soon-to-be-released study about the prevalence of Bartonella in patients diagnosed with Bartonella.
Recorded May 13, 2024
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
In Part 2, the discussion with Dr. Shannon Delaney continues with a focus on the diagnosis and treatment of Lyme and other tick-borne diseases.
Recorded May 13, 2024
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
In Part 3, the discussion with Dr. Shannon Delaney continues on her soon-to-be-released study in Frontiers in Psychiatry Journal about the prevalence of Bartonella in patients diagnosed with Bartonella.
Recorded May 13, 2024
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
In episode two, Susan Manfull interviews Dr. Kyle Williams, Director of the Pediatric Neuropsychiatry and Immunology Program at Massachusetts General Hospital, and Andrew about the potential link between strep, psoriasis, psoriatic arthritis, and obsessive-compulsive disorder (OCD).
Andrew shares his personal experience of how his psoriasis and OCD symptoms improved after being treated with the biologic medication Cosentyx, which targets IL-17, a cytokine involved in inflammation.
Dr. Williams discusses his research to investigate the relationship between IL-17, psoriasis, and OCD, including retrospective and prospective studies. They also discuss the need for a more multidisciplinary approach in medicine to understand better and treat the connections between physical and mental health.
If you have Psoriasis and OCD and would like to share your story with Dr. Kyle Williams, please send an email to [email protected].
Recorded April 25, 2024
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
It seemed our conversation from Episode 2 was left dangling so we continued talking. If you would like to hear a wee bit more, listen to this bonus content which captures most of that conversation, mostly musings about navigating the medical system and whether the division between psychiatry and neurology is artificial (another dangling conversation to be continued in another episode).
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
Lauren Breithaupt, PhD, Assistant Professor of Psychiatry, based in the Eating Disorders Clinical and Research Program at Massachusetts General Hospital, will discuss her cutting-edge research about the immunological basis of eating disorders and PANDAS and PANS.
After briefly describing her work on eating disorders, she talks about her new research on PANDAS and PANS. Entitled “Using a Machine Learning Approach to Identify Immune Biomarkers Associated with PANS/PANDAS,” Dr. Breithaupt’s latest work will focus on PANDAS/PANS, OCD, and restrictive eating disorders (R-ED) with the specific goal of identifying a disease specific biomarker for PANDAS/PANS. This would be a huge step forward for this neuroimmune disorder as, currently, there are no such biomarkers.
To carry out this study, Dr. Breithaupt has established what is believed to be the largest protein library of PANS/PANDAS symptoms to date. The library includes proteins expression levels of 476 adolescents diagnosed with the disorders representing overlapping PANS/PANDAS symptoms -- OCD, restrictive-eating disorders -- as well as individuals with PANS/PANDAS and age matched healthy controls. The goal is to identify disease specific biomarkers for each disorder using this very large and comprehensive data set of patients with symptoms indicative of each disorder.
Identifying protein biomarkers is important for diagnosis, the identification of novel targets for drug development, and to further understand the biological underpinnings of these disorders. Very importantly, the results of this proposed study will serve as pilot data for larger NIMH grants.
Dr. Breithaupt’s current research is funded by The Alex Manfull Fund with generous contributions from The Louisa Adelynn Johnson Fund for Complex Disease and Neuroimmune Foundation.
Recorded March 28, 2024
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
In this bonus episode, I will be talking about our second annual PANS/PANDAS Advocacy Day on Capitol Hill, a joint event planned by the National Alliance of PANS/PANDAS Action (NAPPA) and The Alex Manfull Fund (TAMF) to be held on Friday, April 12th in Washington, DC. My guests -- Amanda Peel Crowley, co-founder of NAPPA, and Paul J. Murphy, Treasurer of The Alex Manfull Fund -- have all the details!
LINK to register: https://thealexmanfullfund.org/advocacy-day-on-capitol-hill-2024/
On Saturday, April 13th, our second annual 5K Run/Walk will take place.
LINK to register: https://thealexmanfullfund.org/the-alex-manfull-fund-2024-5k-run-walk/
BREAKING NEWS: April 8th marks more than (just) solar eclipse!
The Alex Manfull Fund Silent Auction will go live on Monday, April 8th at 12:00 p.m. and will end Sunday, April 14th at 9:00 p.m. with the culmination of the weekend events.
The ECLIPSE serves as a metaphor for the unique and marvelous nature of "36 Hours in DC," a time when patients, advocates, doctors, researchers, scientists, health providers, and legislators come together to advance change on PANDAS/PANS. Where the lives lost will move us all to a place where no life ever again be cut short -- or interrupted -- by infection-associated neuroimmune disorders.
Together, we can ECLIPSE PANDAS/PANS!
Here is the LINK to view the auction items: https://alexmanfullfund.betterworld.org/auctions/going-distance-capitol-hill-poto
Recorded March 29, 2024.
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
The podcast currently has 10 episodes available.
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