Podcast & Related Articles
Podcasts: Mogil's Mobcast- A Scleroderma Chat
Episodes 20 and Episode 21 feature Dr. Jessica Farrell, who does a thorough review on the subject of medications used in treatment of Scleroderma and associated symptoms, both established and emerging. Dr. Farrell has been a national leader in advocacy to bring about approval for pharmaceutical agents as covered treatment for Scleroderma, most notably CellCept. Dr. Farrell is a current medical advisor to the Steffens Foundation.
Episode 33 features Celeste Freeman, an Occupational Therapist and Certified Hand Therapist, discussing the basics of hand care, including ways to avoid soft tissue damage during activities of daily living, for those with Scleroderma. Ms. Freeman is a board member with the Steffens Foundation.
Episode 34 brings us a candid conversation with Amy Geitzen, a woman who has battled Scleroderma and her severe health challenges associated with the illness, for over 20 years. She is a prolific writer and passionate advocate for those living with Scleroderma serving in multiple volunteer positions within the Scleroderma community, both locally and nationally. Ms. Geitzen is a board member with the Steffens Foundation..
Episode 35 features a very informative discussion with Dr. Lee Shapiro, rheumatologist and CMO of the Steffens Foundation. Dr. Shapiro has been a Scleroderma specialist for his entire career in rheumatology, which spans over 40 years. He is internationally recognized as an expert in Scleroderma as well as an expert in the ultra rare Degos Disease. Dr Shapiro is a Professor of Medicine at Albany Medical College where he teaches as well as directs the Scleroderma Center.
Episode 38 is a conversation with Dr. Lesley Ann Saketkoo, MD,MPH who is the director and founder of New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center. Dr. Saketkoo discusses current research she has done on the importance of exercise when living with Scleroderma. Her communication about this subject is engaging and highly informative. Dr. Saketkoo is one of the medical advisors for the Steffens Foundation.
Episode 39 is an interview with Dr. Michael Hughes BSc (Hons) MSc MBBS MRCP (UK) (Rheumatology) PhD Is Consultant Rheumatologist at Salford Royal Hospital, which is a national UK referral center for SSc, and Honorary Senior Clinical Lecturer at The University of Manchester.He has emerged as a leading national and international investigator in SSc and Raynaud’s phenomenon, with a focus on novel clinical assessment of vascular biology and function, including the development of new novel approaches to treatment. His doctoral PhD research fellowship (2013-2016) at The University of Manchester investigated the outcome measures of treatment efficacy, pathophysiology, and local treatments for SSc-digital ulcers. Dr.Hughes has a strong research interest in non-invasive imaging and the development of patient reported outcome measures, and works closely with patient-led organizations. He was awarded the Edith Busch Young Investigator Award in recognition of his significant contributions during the World Scleroderma Congress in 2022. Under the auspices of the World Scleroderma Foundation he leads the Digital Ulcer Working Group, and co-leads the Gastrointestinal disease Working Group. Dr. Hughes has published extensively in both clinical and basic research and has contributed to the development of SSc treatment guidelines and recommendations. He contributes to many international initiatives and collaborations including as a Fellow of the OMERACT Scleroderma Vascular Disease Working Group. He has presented and chaired at prestigious national and international conferences, and is on the editorial board of several international rheumatology journals. Dr. Hughes is a medical advisor with the Steffens Foundation.
Episode 43 features a fascinating conversation with Patricia Fennell MSW, CSW-R, is a scientist, clinician, and author specializing in chronic illness, trauma, forensics, and hospice care. She is CEO of Albany Health Management, Inc., an organization that treats and examines global health care concerns through clinical care, consulting, research, and professional education, utilizing the empirically validated Four Phase Model and Fennell Four Phase Treatment (FFPT™) approach. Ms Fennel has lectured throughout Europe, Africa, Canada and the US consulting to government(s), academia, patient organizations, Fortune 150 companies, and the CDC in areas including CI, innovation, restorative justice and trauma. Publications and Textbooks include: Managing Chronic Illness: The Four Phase Treatment Approach, and The Chronic Illness Workbook. Ms Fennel has participated in the Steffens IPE as an expert panelist from its inception, and is a good friend of the foundation.
