SRF Webinar Series
The SRF Webinar Series is a free service to help patients, physicians, family members, friends and others in the scleroderma community to better understand scleroderma. Our Webinars feature guest speakers ranging from experts in the research community to leading physicians who treat scleroderma patients. Webinars will be broadcast live and also recorded for later viewing on the SRF website.
Each SRF Webinar lasts approximately one hour. A question and answer session is available via chat functionality at the conclusion of each presentation. Webinars are free for all participants but require online registration, Internet access and a telephone (for audio). A toll-free number is provided for U.S. and Canadian attendees.
The SRF thanks the following sponsors for their commitment to patients and for their support of the
the 2014/2015 Webinar Series:
Webinar #15 - click here to view.
Date: August 21, 2014 10:00 AM PDT
Speaker: Francesco Boin, MD
Title: Diagnosis and Early Management of Scleroderma
Dr. Francesco Boin, is a physician-scientist and Assistant Professor of Medicine at Johns Hopkins. He is an integral part of the team serving patients at the Johns Hopkins Scleroderma Center. This session details the diagnosis and early management of scleroderma and its most pervasive symptoms.
Speaker Bio: Dr. Boin received his M.D. degree from the University of Padova Medical School (Italy). He completed his internship and residency in internal medicine at the Mayo Clinic (Rochester, Minnesota) and a post-doctoral fellowship in clinical and experimental rheumatology at Johns Hopkins University. Dr. Boin is interested in Translational Research: studies that apply basic research technology directly to study patients’ clinical disease. Dr. Boin’s research focuses on the cellular biology of immune cells and the mechanisms of autoimmunity in scleroderma. His goal is to identify reliable laboratory tools that can help investigate the causes of scleroderma, effectively measure disease activity, monitor treatments and help predict clinical outcomes in scleroderma patients.
Webinar #14 - click here to view.
Date: May 29, 2014 9:30 AM PDT
Speaker: Christopher Denton, PhD, FRCP
Title: Scleroderma In The Kidney
Dr. Christopher Denton, with the Royal Free and University Hospital in the UK, is an expert on renal complications in scleroderma and in this session he provides insights on its impact for scleroderma patients.
Speaker Bio: Dr. Denton is Professor of Experimental Rheumatology at UCL Medical School and Consultant Rheumatologist and Joint Director of the Centre for Rheumatology, Royal Free Hospital, London. He runs the largest scleroderma service in UK with more than 1,000 scleroderma patients and has published extensively on laboratory and clinical aspects of Raynaud's phenomenon, connective tissue disease and pulmonary hypertension. A compassionate physician, he also finds time to lead the UK Scleroderma Study Group (UKSSG), be Treasurer of EUSTAR and Chair the Heberden Scientific Committee of the British Society for Rheumatology (BSR). Professor Denton has recently co-edited a major textbook of scleroderma and manages an expert team of nurses, doctors and research fellows including several previously supported by the Raynaud's and Scleroderma Association.
Webinar #13 - click here to view.
Date: December 12, 2013 10:00 AM PST
Speaker: Pankaj (Jay) Pasricha, MD
Title: GI Complications and Treatments in Scleroderma
Dr. Pasricha, is leading the establishment of the Johns Hopkins Center for Neurogastroenterology. In this session, he shares his expertise about GI complications in scleroderma.
Speaker Bio: Dr. Pasricha comes to Hopkins after five years at Stanford University, where he was Chief of Gastroenterology. He is an expert in neurogastroenterology and deals with disorders affecting the nerves and muscles of the stomach causing problems with gastrointestinal motility and pain. He provides his expertise to the patients at the Hopkins Scleroderma Center, as well patients with motility disorders diseases ranging from Parkinsons to Autism, and diabetes to obesity—all stand to benefit from his research. Over the course of his career, Dr. Pasricha has been credited with more than 30 patents for novel gastrointestinal diagnosis and treatment methods. His extensive publications on the enteric nervous system and gut-brain axis have garnered global attention.
Webinar #12 - click here to view.
Date: September 17, 2013 10:00 AM PDT
Speaker: Laura Hummers, MD
Title: What's New in the World of Scleroderma
Dr. Laura Hummers, Co-Director of the Johns Hopkins Scleroderma Center discusses the latest treatments available for various scleroderma complications as well as what is on the horizon for new clinical trials and therapies.
Speaker Bio: Dr. Hummers earned her M.D. degree from the University of Rochester School of Medicine & Dentistry. She completed her internship and residency at Thomas Jefferson University and a post-doctoral fellowship at Johns Hopkins. Dr. Hummers is a physician-scientist whose research focuses on properties of blood that could help predict outcomes for patients with scleroderma. She is also interested in understanding the natural course of the disease and developing new treatments for scleroderma.
Webinar #11 - click here to view.
Date: July 12, 2013 10:30 AM PDT
Speaker: Lorinda Chung, MD, MS
Title: Skin Manifestations in Scleroderma
Dr. Lorinda Chung's presentation focuses on how scleroderma affects the body, and most specifically, skin manifestations in scleroderma patients. She provides insight on this aspect of the disease and how patients can better manage it; looking at signs, symptoms, treatments and the biological mechanisms at work.
Speaker Bio: Dr. Chung, is Assistant Professor of Medicine and Dermatology at Stanford University School of Medicine. She completed medical school training at Ohio State University and completed a residency in Internal Medicine, fellowship in Rheumatology and obtained a Master of Science in Epidemiology at Stanford. Since joining Stanford’s faculty in 2007, she has served as Director of the Scleroderma Center and Co-Director of the Multi-disciplinary Rheumatologic Dermatology Clinic. Dr. Chung is actively involved in clinical, translational and epidemiologic research on systemic sclerosis and related connective tissue diseases. She is the principal investigator for multiple clinical trials of new potential therapies for scleroderma patients. She serves as the Secretary for the Scleroderma Clinical Trials Consortium and initiated the Northern California Scleroderma Research Consortium with investigators at Stanford and UCSF in 2012, where she serves as the co-leader of this group.
Webinar #10 - click here to view.
Date: May 22, 2013 10:00 AM PDT
Speaker: Monique Hinchcliff, MD, MS
Title: Systemic Sclerosis: A Treatable Multi-System Disease
The tenth webinar in a series designed to help patients and others in the scleroderma community understand the disease, what's being done to find a cure and what new treatments are on the horizon. Dr. Monique Hinchcliff, Director of Translational Research at the Northwestern Scleroderma program, will discuss systemic sclerosis as a multi-system disease.
Speaker Bio: Dr. Hinchcliff is the Director of Translational Research at the Northwestern Scleroderma Program and Assistant Professor of Medicine in the Division of Rheumatology. She earned her medical degree at the Chicago Medical School at Rosalind Franklin University of Medicine and Science. She completed her residency in Internal Medicine at Norwalk Hospital in Connecticut, an affiliate of Yale University School of Medicine, and a fellowship in Rheumatology at Northwestern University Feinberg School of Medicine. Dr. Hinchcliff divides her time between caring for patients at the Northwestern Scleroderma Program and conducting clinical and translational research. She has won several research awards, including the Northwestern Memorial Foundation-MD Scientist Fellowship in Genetic Medicine in 2007. More recently, she was awarded a National Institutes of Health research grant focusing on the development of biomarkers to classify various types of scleroderma and evaluate response to therapy.
Webinar #9 - click here to view.
Date: May 8, 2013 10:00 AM PDT
Speaker: Dinora Dominguez, BS, RN
Title: Clinical Trials: Consider the Possibilities
Dinora Dominguez shares how patients and those who care about them can get involved with clinical trials. At the time of our webcast, there were more than 62 clinical trials currently enrolling for scleroderma treatments. View this webinar to learn more about the process and how you can become an active participant in the search for better treatments and a cure.
Speaker Bio: Ms. Dominguez is Chief of the Office of Patient Recruitment at the NIH Clinical Center. She earned a degree in nursing from the University of Rhode Island. She has over 15 years of experience in the patient recruitment field. She has been a guest on local and national Spanish-language radio broadcasts and regularly speaks with community groups about the need of participating in clinical trials. Ms. Dominguez recently received the Clinical Center Director’s award for her work in re-engineering public inquiry response for clinical research participation. She is also a recipient of a NIH Silver Plain Language/Clear Communication award. She has recently published in the Journal of the Association of Nurses in AIDS Care and Contemporary Clinical Trials. Of her work at the NIH Clinical Center, she says: “This is where research done today becomes the treatments of tomorrow. Clinical research provides individuals with more choices, and studies done today will help generations to come.”
Webinar #8 - click here to view.
Presented: December 14, 2012 11:00 AM PST
Speaker: Andrew Tager, MD
Title: New Directions for Scleroderma Treatments; Understanding the Basis for Current Clinical Trials
Dr. Andrew Tager focuses his research efforts on understanding the mechanisms that cause two fibrotic diseases, scleroderma and idiopathic pulmonary fibrosis (IPF). Fibrosis, or scarring, in these diseases remains an unmet need that causes high morbidity and mortality, and is largely unresponsive to currently available pharmacologic therapies. Dr. Tager's lab is focused on identifying chemicals produced by the body that promote the development of fibrosis. Most importantly, his work aims to find ways to inhibit such molecules to prevent the progression of fibrotic diseases, and/or promote healing of scarred organs. With clinical trials currently planned that target a chemical promoting fibrosis in scleroderma skin and IPF, Dr. Tager is uniquely qualified to present New Directions for Scleroderma Treatments: Understanding the Basis for Current Clinical Trials.
Speaker Bio: Dr. Andrew Tager is an Assistant Professor at Harvard Medical School, with appointments in the Center for Immunology and Inflammatory Diseases and the Pulmonary and Critical Care Unit of the Massachusetts General Hospital (MGH). He is also the co-director of the MGH Interstitial Lung Disease Clinic, which focuses on patients with lung fibrosis, including those with scleroderma. Dr. Tager received his M.D. from Harvard Medical School and completed both his internal medicine residency as well as his pulmonary and critical care medicine fellowship at the MGH. His laboratory recently published papers providing evidence that a chemical called lysophosphatidic acid (LPA) promotes the development of skin fibrosis in scleroderma and lung fibrosis in IPF. Clinical trials are currently planned in both of these diseases for new drugs targeting the LPA pathway. Dr. Tager's laboratory has received generous research funding from the Scleroderma Research Foundation since 2010. He continues to concentrate his research efforts on understanding the mechanisms that cause scleroderma and idiopathic pulmonary fibrosis (IPF).
Webinar #7 - click here to view the webcast.
Presented: October 30, 2012 11:00 AM PST
Speaker: Roham Zamanian, MD, FCCP
Title: Pulmonary Hypertension as a Complication of Scleroderma: A Guide for Patients and Caregivers
Dr. Roham Zamanian discusses pulmonary complications of scleroderma. As a leading team member of the Stanford Pulmonary Hypertension (PH) Program, Dr. Zamanian provides insights on the comprehensive diagnostic and therapeutic services available to patients with all forms of pulmonary hypertension. Fifteen years ago, pulmonary hypertension was considered to be a uniformly progressive and fatal disease. While exciting new treatments have been developed since then, patients with pulmonary hypertension face a truly life-threatening illness. In the seventh in our series, Dr. Zamanian educates participants on PH and the research being done to develop new treatments and prolong the life of patients.
Speaker Bio: Dr. Zamanian is the director of the adult pulmonary hypertension clinical service at Stanford Hospital and Clinics. He is also an assistant professor of medicine at the Stanford School of Medicine. Dr. Zamanian’s career has focused on translational and clinical research relating to pulmonary vascular diseases with a specific focus on pulmonary arterial hypertension. As a faculty member of the Vera Moulton Wall Center for Pulmonary Vascular Disease, he is dedicated to growing the translational capacity of the program. As such, he has developed the Stanford Pulmonary Hypertension Biobank as well as helped with improvement and implementation of the Wall Center Pulmonary Hypertension Database. After migrating to the United States from Iran in 1984 (read about his adventurous journey here), Dr. Zamanian received his medical degree from University of California, Irvine College of Medicine in 1999.
Webinar #6 - click here to listen (no video).
Presented: September 26, 2012 11:00 AM PDT
Speaker: Megan Liddicoat, RN, BSN
Title: Grief to Hope: From Loss to Healing
Nurse practitioner and Actelion Pharmaceuticals Clinical Educator Megan Liddicoat, RN BSN, discusses ways to cope with scleroderma and how patients can better manage the emotional stresses of their disease in the sixth webinar of our series. Specifically, her presentation explores losses experienced by those challenged with chronic medical conditions. The stages of grief are outlined and examples of both positive as well as negative coping are provided for each stage.
Speaker Bio: Megan Liddicoat has more than a decade of experience in nursing, including positions in the Neonatal Intensive Care Unit at Children's Hospital, a research nurse at the University of Colorado Pulmonary Hypertension Center and her current position with Actelion, focusing on clinical education specific to pulmonary arterial hypertension (PAH) and the psychosocial impacts of the disease. In addition to her nursing degree, Ms. Liddicoat holds a degree in Food Science and Nutrition.
Webinar #5 - click here to view the webcast.
Presented: June 28, 2012 11:00 AM PDT
Speaker: Bob Saget
Title: A Conversation about Scleroderma
In the fifth webinar of our series, Bob Saget discusses the loss of his sister to scleroderma, his involvement as a Board Member and advocate for patients at the Scleroderma Research Foundation and how others can help to find a cure. The unscripted Conversation about Scleroderma also features Luke Evnin, PhD, Chairman of the Board of Directors, who joined Bob to discuss current research as well as what patients can expect next.
Speaker Bio: SRF Board Member Bob Saget has starred in many successful television shows, including two of the most family-friendly shows network TV has ever produced (Full House and America’s Funniest Home Videos). He’s also a director, producer and a standup comedian for more than 30 years. From his HBO special That Ain’t Right to scene-stealing cameos in Entourage and The Aristocrats, Saget is equally comfortable embracing his dark side as he is performing for family television.
He directed MGM’s cult favorite feature film Dirty Work, as well as directed and produced the highly acclaimed ABC television movie, For Hope, starring fellow SRF Board Member Dana Delany, based on his sister’s struggle with scleroderma. He starred in the critically acclaimed Paul Weitz off-Broadway play, Privilege, and on Broadway in the Tony Award® winning The Drowsy Chaperone.
In 2007, Bob celebrated the hugely successful DVD release of Farce of the Penguins, an R-rated comedy/documentary/love story that he voiced, wrote, directed and produced with David Permut. He also hosted the hit NBC quiz show, 1 VS 100. In 2008, The Comedy Central Roast of Bob Saget premiered to first place ratings while his sitcom, Surviving Suburbia, aired on ABC.
Since 1992, he has helped to raise funds and increase awareness about scleroderma and the need for a cure by hosting and co-producing the Foundation’s Cool Comedy – Hot Cuisine events in Los Angeles, New York and San Francisco. The events have raised millions of dollars for scleroderma research and introduced the disease to people all over the world through media exposure. Bob has also appeared before Congress to testify on behalf of scleroderma patients in support of increased funding for research.
Bob was seen reprising the role of “himself” on HBO’s hit series Entourage and starred in his own documentary comedy series for A&E, Strange Days with Bob Saget, an exploration of unusual subcultures in America. He recently guest starred on Entourage: A Look Back and Louie, and is currently on a new tour playing to sold out audiences in theaters and universities across North America. He is preparing to shoot his next stand-up TV special later this year.
Webinar #4 - click here to view the webcast.
Presented: April 25, 2012 11:00 AM PST
Speaker: Fredrick Wigley, MD
Title: Scleroderma: A Complex Vascular Disease
The fourth in our series Dr. Fredrick Wigley focuses on how scleroderma affects our bodies – with specific emphasis on the vasculature, or blood vessels. The webinar explores the signature scleroderma symptom of Raynaud’s Phenomenon and other vascular aspects of the disease; looking at signs, symptoms, treatments and other disease management tools.
Speaker Bio: Dr. Wigley is a Professor of Medicine and Founder/Director of the Johns Hopkins Scleroderma Center. He received his MD degree from the University of Florida College of Medicine and completed an internship and residency at Johns Hopkins where he also trained in a postdoctoral fellowship program. He is a physician-scientist leading one of the nation’s pre-eminent centers focused on scleroderma research and treatment. Dr. Wigley’s research focuses on the events that cause scleroderma and on its signs and symptoms. He is testing new treatments for both Raynaud’s phenomenon and scleroderma. Under Dr. Wigley’s direction, the Hopkins Center has attracted more than 2,000 patients from around the world and sees more than 300 new patients a year. Currently, more than a dozen scleroderma research studies (basic science, clinical trials and epidemiology) are underway. Studies at other research and medical institutions also involve physicians and researchers from The Johns Hopkins Scleroderma Center. Dr. Wigley and his team are finding answers and continue to use the evidence to reach their ultimate goal of finding a cure for scleroderma.
A compassionate physician with a unique understanding of the challenges of scleroderma, Dr. Wigley provides support and hope for patients and their loved ones. View the SRF video Moving Forward featuring Dr. Wigley.
Webinar #3 - click here to view the webcast.
Presented: February 10, 2012 9:00 AM PST
Speaker: Antonios Aliprantis, MD, PhD
Title: Understanding Scleroderma Research: A Look Inside the Toolbox
The third in our series of live webinars. Dr. Aliprantis takes participants on a tour inside the toolbox researchers use to better understand this complex disease.
Speaker Bio: Dr. Aliprantis is an Assistant Professor of Medicine in the Rheumatology Division at Brigham and Women's Hospital (BWH) and Harvard Medical School. He received his MD and PhD from New York University School of Medicine in 2001 where he studied innate immunity and microbiology in the laboratory of Dr. Arturo Zychlinsky. His internal medicine training took place at Bellevue Hospital and, in 2003, Dr. Aliprantis came to BWH for his rheumatology fellowship. Dr. Aliprantis completed his post-doctoral fellowship with Dr. Laurie Glimcher at the Harvard School of Public Health (HSPH) where he developed an interest in bone biology and the autoimmune disease scleroderma. In 2009, he was recruited to the Rheumatology Division at BWH to lead an independent research program where his team pairs mouse genetics with translational human studies to investigate multiple rheumatic diseases including scleroderma, rheumatoid arthritis, osteoarthritis and osteoporosis. Dr. Aliprantis has been working with the Scleroderma Research Foundation since 2006. Along with Dr. Glimcher, he is the recipient of the Foundation's Actelion Research Award made possible from a generous grant from Actelion Pharmaceuticals. Dr. Aliprantis is also the recipient of two prestigious career development awards: the American Society for Clinical Investigation Young Investigator Award and the Burroughs Wellcome Fund Career Award for Medical Scientists. Dr. Aliprantis is also the Director of the Osteoarthritis Center at BWH and is an adjunct Assistant Professor in the Department of Immunology and Infectious Disease at HSPH. He lives in Natick, MA with his wife Kim and their two daughters, ages 4 and 1.
Webinar #2 - click here to view the webcast.
Presented: December 15, 2011 9:00 AM PST
Speaker: John Varga, MD
Title: Accelerating Scleroderma Research Toward a Cure
The second in our series of live webinars. Dr. Varga, a leader scleroderma researcher and physician at Northwestern University, discusses the history of scleroderma research, the present state and what the future holds.
Speaker Bio: Dr. Varga is an internationally recognized expert in the diagnosis, treatment, and study of scleroderma. He is the Director of the Northwestern Scleroderma Program and the John and Nancy Hughes Professor in the Division of Rheumatology. Among numerous professional distinctions, he chairs the Scientific and Medical Advisory Board of the Scleroderma Foundation and is also a Scleroderma Research Foundation-funded research investigator. Since 1998, he has served on various National Institutes of Health Study Section panels. He was recognized as one of 50 "Heroes" of the Arthritis Foundation and was the Scleroderma Foundation's "Doctor of the Year" in 2006.
Dr. Varga is leading high-impact basic and clinical research, and directs an NIH-funded research laboratory at Northwestern. A prolific researcher and author, he has published more than 160 original research articles, along with 60 review articles, multiple book chapters, and three books on fibrosis and scleroderma. His most recent book Scleroderma: From Pathogenesis to Comprehensive Management was authored along with SRF-funded investigators Drs. Christopher Denton and Fred Wigley. He serves on numerous editorial boards and has mentored 20 clinical and research fellows.
Dr. Varga’s lab research focuses on fib.rosis and tissue repair. Fibrosis and aberrant tissue repair are prominent in autoimmune diseases (scleroderma, myositis, lupus) and in organ-based disorders (pulmonary fibrosis, glomerulosclerosis, hypertrophic scar), and are considered intractable. Aberrant tissue regeneration also underlie aging and obesity. Fibrosis contributes to 30% of all deaths worldwide, and thus represents a compelling and urgent scientific challenge. Dr. Varga, along with his team believes that fibrosis is in fact potentially reversible. Their research takes a "systems-biology" multi-disciplinary approach to fibrosis, utilizing human tissue, DNA, serum, animal models and cell biology studies to identify and validate novel targets for therapy, discover genetic risk factors and useful biomarkers. The ultimate goal is to translate these discoveries into clinically relevant approaches.
Dr. Varga received his medical degree from NYU. He completed postdoctoral training as an intern and resident at Rhode Island Hospital, and a fellowship at Boston University Medical Center.
Webinar #1 - click here to view the webcast.
Presented: October 20, 2011 9:00 AM PST
Speaker: James R. Seibold, MD
Title: Progress and Promise in Scleroderma Clinical Research
The first in our series of live webinars Dr. James Seibold, Principal Member of Scleroderma Research Consultants, LLC presents "Progress and Promise in Scleroderma Clinical Research" which focuses on clinical trials and their role in advancing the search for improved therapies and a cure.
Speaker Bio: Dr. Seibold was most recently Professor of Medicine and Chief of the Division of Rheumatology at the University of Connecticut Health Center in Farmington, Connecticut, USA. He had previously served on the faculty of the University of Michigan from 2004-2010 as the Marvin and Betty Danto Research Professor of Connective Tissue Research and Professor of Internal Medicine in the Division of Rheumatology and as the founding Director of the University of Michigan Scleroderma Program. He joined the faculty at Michigan in August of 2004 after 24 years at the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School in New Brunswick, NJ. He served as Chief of the Division of Rheumatology; Director of the Clinical Research Center; and Chair of the Department of Clinical Pharmacology during which he occupied the William H. Conzen Chair of Clinical Pharmacology.
The author of more than 300 scientific publications, Dr. Seibold has served on the editorial boards of both Arthritis & Rheumatism and the Annals of Rheumatic Diseases, and as editor of the scleroderma section of the Yearbook of Rheumatology, Arthritis and Musculoskeletal Disease and Editor-in-Chief of Scleroderma Care and Research. He is currently an Editor of Scleroderma Care and Research and on the Editorial Boards of Clinical and Experimental Rheumatology and the International Journal of Rheumatology.
His major research interests include systemic sclerosis, Raynaud's phenomenon, interstitial lung disease, pulmonary hypertension, clinical trial design, and drug development in rheumatology. Dr. Seibold has led or been a key participant in nearly every major interventional trial of scleroderma since 1980 and currently serves as the Lead International Investigator on DETECT, a series of studies of oral treprostinil for digital ulcers and the Scleroderma QuERI.
Dr. Seibold has been cited in The Best Doctors in America continuously since the first edition in 1994 and has won numerous awards, including the Arthritis Foundation's Physician of the Year. He is the founder and a past President of the Scleroderma Clinical Trials Consortium and active in several patient organizations, including the Pulmonary Hypertension Association, the Scleroderma Research Foundation, and serves as Chair of the Medical Advisory Board of the International Scleroderma Network.
Dr. Seibold received his undergraduate degree in biochemistry from Louisiana State University in Baton Rouge, LA, and his medical degree from SUNY at Stony Brook School of Medicine in Stony Brook, NY. He completed postdoctoral training as an intern and resident in internal medicine at Long Island Jewish-Hillside Medical Center in New Hyde Park, NY, and a fellowship at the Division of Rheumatology and Clinical Immunology at the University of Pittsburgh School of Medicine in Pittsburgh, PA. He is a Fellow of the American College of Rheumatology and the American College of Physicians.