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
2012-2013 Webinar Series:
Webinar #10 - click here to register.
Date: May 22, 2013 10:00 AM PDT
Speaker: Monique Hinchcliff, MD, MS
Title: Systemic Sclerosis is a Treatable Multi-System Disease
Webinar #11 - click here to register.
Date: July 12, 2013 10:30 AM PDT
Speaker: Lorinda Chung, MD, MS
Title: Skin Manifestations in Scleroderma
Webinar #9 - click here to listen.
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 listen.
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.
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 fibrosis 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.