Juliette C. Madan, MD, MS wears many hats. Dr. Madan is an Associate Professor of Pediatrics, Psychiatry, Epidemiology, and Quantitative Biomedical Data Science at Geisel School of Medicine at Dartmouth. She is the Clinical Director of the Children’s Environmental Health and Disease Prevention Research Center within Geisel and Dartmouth Hitchcock Medical Center. She is widely recognized for her research in understanding the intestinal microbiome’s role in health and disease and in interventions such as nutritional, probiotic regimens, and fecal matter transplant.

My relationship with Dr. Madan grew out of her role as co-founder of the Psychiatry Immunology and Neurology Group (known as PING) which is now named the Neuroimmune Psychiatric Disorders (NIPD) Clinic, one of only a handful of clinics in the nation devoted to treating PANDAS and PANS in children and adults. That was founded in 2019. Today, she and Dr. Richard Morse, a neurologist with whom she founded PING, are the co-chairs of The Alex Manfull Fund Scientific and Medical Advisory Board

I could have talked to Dr Madan about a multitude of subjects but, for this interview I asked her to wear her Epidemiology hat. (She promised to return to discuss other areas).

Current estimates of the incidence of PANDAS/PANS varies widely from 1 in 46,000 to as high as 1 in 200. The latter figure is bandied around but it is not based on research, epidemiological or otherwise. Dr Madan discusses her own recent (2023) research with Dr. Ellen Wald, a highly respected pediatric infectious disease physician, and others on the prevalence of PANDAS and PANS. Because there were many limitations in that study, she and Dr. Wald are about to conduct an (NIH-supported) epidemiological study to answer the prevalence question using a different methodology,

Dr Madan is a graduate of Brown University School of Medicine, after which she completed a fellowship program in neonatal-perinatal medicine at Tufts University and while at Tufts, completed a master's degree in clinical and translational research.

When Dr. Madan is not in her clinic or her lab, look for her on the Connecticut River as she is a passionate rower. She also manages to find time with her ducks and chickens!

NOTE: My conversation with Dr. Madan was recorded prior to the December 16, 2024 release of the preliminary clinical report on PANS by The American Academy of Pediatrics (AAP).

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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Dr. Warris Bokhari, CEO and co-founder of the insurance appeals platform Claimable, discusses how the product is helping patients with PANDAS and PANS diagnoses fight denied healthcare claims. He explains the process of using Claimable to submit comprehensive appeals that cite medical research and leverage State laws, resulting in an 85% success rate on average. Dr. Mark Pasternack, Chief of Pediatric Infectious Disease at Boston's Massachusetts General Hospital, shares his experiences about the challenges of getting IVIG treatments approved for his patients, highlighting a need for a solution like Claimable. The discussion cover the impact of healthcare denials on patients and families, as well as the role that advocacy and media attention can play in driving change in the insurance industry.

In addition to PANDAS and PANS, Claimable serves adult rheumatology, inflammatory bowel disease (ulcerative colitis and crohn's), and migraine. Appeal services for PANDAS and PANS patients are currently free. To learn about Claimable, please visit GetClaimable.com.

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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Pawel Kiela, DVM, PhD currently holds the rank of Professor and has a PANDA endowed chair in Autoimmune Disease Research in the Department of Pediatrics at the University of Arizona Medical School in Tucson. Dr. Kiela is an integral part of the Steele Children’s Research Center which has four integrated branches: basic science, clinical research, clinical care, and teaching to address a range of neuropsychiatric disorders such as PANS, PANDAS, and Sydenham’s Chorea. He is a lead scientist in two Centers of Excellence: Children’s Post-Infectious Autoimmune Encephalopathy and the Daniel Cracciolo Institute for Pediatric Disease Research and the Associate Director of Pediatric Gastroenterology Fellowship Program.

Dr. Kiela received his DVM from the Warsaw University of Life Science in Poland and his PhD from the same University and Lund University in Sweden in the developmental physiology of the gastrointestinal tract. His primary research interest is autoimmune and autoinflammatory diseases, especially Crohn’s disease, ulcerative colitis, gut microbiota, mucosal immunology, and extraintestinal manifestations of intestinal inflammation. I am very happy to say that Dr. Kiela, in recent years, has brought his in-depth understanding of the aforementioned research areas into the study of PANDAS and PANS. (What good fortune for the PANDAS/PANS community.)

When Dr. Kiela isn’t in his lab, you may find him working on his 1962 Airstream travel trailer, a challenging endeavor, he explained as he is essentially bringing his beloved Airstream back to life. This hands-on work keeps his sanity, he joked: “In contrast to the lab work, there are many more opportunities for immediate rewards.”

Note: Dr Kiela’s endowed chair has the remarkably coincidental acronym, PANDA, however, in this case stands for “People Acting Now Discover Answers” and is a gift from the Phoenix Women’s Board of the Steele Children’s Research Center.

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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