ACR on Air Podcast

In this episode, we’re joined by Karen Durrant, RN, BSN, founder of the Autoinflammatory Alliance, who shares her powerful journey from a determined parent seeking a diagnosis for her child to the leader of a global patient advocacy movement. What began as a personal quest has evolved into an international network supporting thousands affected by autoinflammatory diseases. Karen discusses how her collaboration with Fatma Dedeoglu, MD, a leading pediatric rheumatologist, helped bridge the gap between patient experience and medical research—ultimately contributing to the development of international clinical guidelines that are transforming care for rare disease patients worldwide.

Karen Durrant RN, BSN – Karen Durrant, RN, BSN, is a specialty pediatrics case manager in the San Francisco Bay Area, caring for patients with rheumatic diseases, and other conditions. She is also the president and founder of the Autoinflammatory Alliance, a nonprofit dedicated to improving awareness, care and treatment for patients with autoinflammatory and immune-dysregulatory diseases. She is also the patient organization representative for the International Society of Systemic Autoinflammatory Diseases (ISSAID) and the Translational Autoinflammatory Research Network (TARN) steering committee, in addition to co-leading Patient Advocacy for the Childhood Arthritis Rheumatology Research Alliance (CARRA) PFAPA/Autoinflammatory Working Group.

One of Karen’s three children has a rare autoinflammatory disease from birth, and another child was diagnosed at school age with juvenile arthritis, along with other conditions. The path to a diagnosis, and treatment for a rare and systemic autoinflammatory disease, including clinical trials and the challenges caring and advocating for loved ones with rare diseases inspired Karen to form a nonprofit with other patient or parent advocates to help more patients, families, and their healthcare providers in the US and globally. Karen is driven by her belief that “Earlier diagnosis and treatment can change and save lives,” and that more research and awareness is needed for autoinflammatory diseases, as these are largely lifelong, and often underdiagnosed diseases.

Fatma Dedeoglu, MD – Fatma Dedeoglu, MD, is an associate professor of Pediatrics at Harvard Medical School and a staff clinician at Boston Children’s Hospital (BCH) in Immunology Division providing care for children with immune dysregulation including autoinflammatory and autoimmune conditions, primary immunodeficiency and allergies. She graduated from Istanbul University, School of Medicine. She studied autoantibodies, T cell receptors and autoimmunity in Dr. Marchalonis’s lab in Microbiology/Immunology Department at the Univ. of Arizona. She did pediatric residency at Monmouth Medical Center, in NJ, and pediatric rheumatology fellowship at BCH. She studied the regulation of AID gene expression in Dr. Raif Geha’s lab.

As a full-time clinician since 2003, she has been involved in clinical research. She has established an autoinflammatory clinic at BCH and has contributed to the discovery of new diseases. She is also the co-director of a combined rheumatology/dermatology clinic. Dr. Dedeoglu is actively involved in the activities of Pediatric Rheumatology Organization, CARRA and co-lead the establishment of the autoinflammatory study group. She serves as one of the core members of several international autoinflammatory work groups and is the current Education committee chair of International Society of Systemic Autoinflammatory Diseases. She is involved in patient advocacy and works very closely with several patient organizations including Autoinflammatory Alliance.

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In this episode, we’re joined by myositis expert Brian Feldman, MD, MSc, FRCPC, to explore juvenile dermatomyositis (JDM)—its clinical presentation, key diagnostic clues, and the diagnostic workup, including labs and imaging. We also examine the high-stakes scenario of JDM-associated rapidly progressive interstitial lung disease, offering insights into its pathophysiology, imaging findings, and aggressive early treatment.

Brian Feldman, MD, MSc, FRCPC – Brian Feldman, MD, MSc, FRCPC, is Professor of Pediatrics, Faculty of Medicine, and Institute of Health Policy Management & Evaluation at the Dalla Lana School of Public Health, University of Toronto. He is Division Head of Rheumatology at The Hospital for Sick Children.

Dr. Feldman’s focus is clinical research in the field of childhood rheumatic disease. Recognizing the challenges involved in the study of rare diseases, Dr. Feldman has worked to improve the tools available to assist in this research. He has worked at developing and refining outcome measurement tools for use in clinical trials and in outcome studies, developed innovative methodologies for the study of new therapies (e.g., the Randomized Placebo Phase Design), refined and tested powerful existing methods (e.g., Bayesian meta-analysis of n-of-1 randomized trials) and developed ways of applying causal methods to observational studies of rare disorders.

Dr. Feldman has made contributions to the understanding of the prognosis and treatment of juvenile dermatomyositis, the cost-effective prevention of arthropathy in severe hemophilia, the course and outcome of systemic-onset juvenile idiopathic arthritis and juvenile SLE, and the role of fitness and exercise in childhood chronic diseases including arthritis, dermatomyositis and fibromyalgia.

Dr. Feldman’s research, by its nature, is collaborative. As such he is a member of the Pediatric Rheumatology Collaborative Study Group, the Canadian Alliance of Pediatric Rheumatology Investigators, the International Myositis Assessment Criteria study group, and other collaborative organizations. He was one of the founding members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and was the head of the protocol evaluation subcommittee and chair of the Juvenile Dermatomyositis subcommittee.

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In this episode, we're joined by Dana DiRenzo, MD, MHS, to explore groundbreaking developments in the treatment of Sjögren’s Disease. For the first time, therapies like BAFF blockade, CD40 ligand inhibitors, and FcRn antagonists appear poised to change the course of the disease—moving beyond symptom management to potential disease modification. We delve into the underlying science, current clinical trials, and tackle the big question: how early is early enough to begin treatment? Dr. DiRenzo also shares her expert perspective on holistic symptom management through what she calls the "4 Pillars of Health," offering practical strategies for improving quality of life for those living with Sjögren’s Disease.

Dana DiRenzo, MD, MHS – Dana DiRenzo, MD, MHS, is an Assistant Professor of Clinical Medicine at the Penn Sjögren's Center. She received her undergraduate medical degree from Temple University and completed residency in Internal Medicine at the University of Maryland. She then went on to complete a fellowship in Rheumatology at the Johns Hopkins Hospital with additional obtainment of a Masters of Health Science (MHS) in the Graduate Training Program in Clinical Investigation from The Johns Hopkins Bloomberg School of Public Health.

After fellowship, Dr. DiRenzo was on faculty at Johns Hopkins (2019–2021) and a member of their Sjögren's Center and subsequently joined faculty at the University of Pennsylvania in July 2021. Her research interests in Sjögren's Disease include health related quality of life (HRQoL) and she is on the steering committee for the Outcome Measures in Rheumatology (OMERACT) for the Sjögren's Disease working group. She leads the Prospective Longitudinal Study to Understand Sjögren's (PLUS). She additionally has expertise in inflammatory arthritis and musculoskeletal ultrasound with a RhMSUS certification.

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In this episode, we take the leap from the structured world of rheumatology fellowship into the dynamic, often unpredictable landscape of private practice. J. Thomas Berry, DO, shares his personal journey, offering an honest and insightful look at the transition. From the practical differences between academic and private settings to the business learning curve, patient care dynamics, and how he stays clinically sharp, this conversation is a must-listen for fellows preparing to enter independent practice.

J. Thomas Berry, DO – J. Thomas Berry, DO, received his medical degree from the University of New England College of Osteopathic Medicine in Biddeford, ME. Dr. Berry completed his residency at Advocate Lutheran General Hospital where he was also Chief Resident. Dr. Berry completed his rheumatology fellowship at the University of Illinois in Chicago. He is in private practice at Arnold Arthritis and Rheumatology in Skokie, IL. His wife is also a physician, and they have a son.

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In this episode, we examine Behçet’s disease (BD) – a rare, multisystem inflammatory disorder that continues to challenge traditional frameworks of autoimmunity and vasculitis. Johannes Nowatzky, MD, joins us to discuss the disease’s hallmark features, including recurrent mucocutaneous ulcers and ocular involvement, as well as its geographic distribution and genetic associations. We explore the diagnostic difficulties posed by its heterogeneous presentation and symptom overlap with other conditions, and the rationale behind individualized, often multidisciplinary treatment strategies. This conversation offers valuable insights into a condition that remains as enigmatic as it is clinically significant.

Johannes Nowatzky, MD – Johannes Nowatzky, MD, is a rheumatologist physician-scientist, Associate Professor of Medicine and of Ophthalmology at Stanford University.

He received his MD at Freie Universität Berlin in Germany and then moved to Israel where he completed his internal medicine residency at Hadassah Hebrew University Medical Center in Jerusalem. This where he got exposed to large numbers of Behcet’s disease patients and acquired his clinical expertise in BD.

Dr. Nowatzky subsequently moved to the US to pursue rheumatology fellowship training at NYU where he ultimately became the director of the Behçet’s Disease Center and received national and international referrals for BD and BD-related problems. He won two R01 grants, including the first R01 primarily focused on Behçet’s in more than 35 years of NIH extramural funding history and set up an independent immunology research program.

At Stanford, he leads the Behçet’s Program – BD-PRO – a unique multidisciplinary diagnostic, treatment, and research effort completely dedicated to Behçet’s disease. He is also the director of the Human Ocular Autoimmunity Program (HOAP), which intersects with BD-PRO, the immunology community at Stanford, and his lab which is focused on the biology of BD, mechanisms of antigen presentation and HLA class I restriction as well as other aspects of human inflammatory diseases.

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