Vasculitis Visionaries

In VF's Vasculitis Visionaries' nineteenth episode, Ben is joined by Dr. Linda Wagner-Weiner, a Chicago-based pediatric rheumatology expert who is currently leading the construction of a brand new website devoted entirely to patients (and their families) with pediatric vasculitis. Listen in to learn about the challenges of building an all-encompassing website from scratch, her perspective on the evolution of vasculitis treatment throughout her 40 year medical career, and more.

In VF's Vasculitis Visionaries' eighteenth episode, Ben and Kaley are joined by Dr. Jessica Bloom, a pediatric rheumatologist and assistant professor of pediatrics at University of Colorado School of Medicine. The first pediatric rheumatologist to be selected for the VCRC/VF Fellowship, Dr. Bloom focuses on advancing evidence-based management of AAV in children. Listen in to learn about her ongoing collaborations, vasculitis mentors, and plans for the future of pediatric vasculitis treatment and research.

Ben and Kaley will return with a new Vasculitis Visionaries episode in September. This is a special edition featuring a compilation of interview segments from Season 2 of the series.  They have selected some of the most exciting, engaging, and informative highlights from past episodes. Guests include Dr. Velma Mockett, Kalen Young, Dr. Leonard Calabrese, Dr. Sebastian Sattui, and Dr. Aurora Fifi-Mah.

In VF's Vasculitis Visionaries' seventeenth episode, Ben and Kaley are joined by Dr. Aurore Fifi-Mah, a clinical associate professor with University of Calgary's Division of Rheumatology in Alberta, Canada. A vasculitis researcher and patient advocate, Dr. Fifi-Mah has collaborated with and/or cofounded many organizations, including the Calgary Vasculitis Association, the Caribbean Association of Rheumatology, and the Vasculitis Clinical Research Consortium (VCRC). She's studied the adverse effects associated with immunotherapy and advised vasculitis patients on timing their COVID-19 vaccinations around their immunosuppressive treatments. Tune in to learn more about her patient advocacy and education, as well as the use of patient registries in vasculitis research.

In VF's Vasculitis Visionaries' sixteenth episode, Ben and Kaley sit down with Dr. Sebastian Sattui, the soon-to-be co-lead of the University of Pittsburgh Medical Center (UPMC) Vasculitis Center. Currently finishing up a vasculitis fellowship at the Hospital for Special Surgery in New York, Dr. Sattui was the recipient of the 2019 Vasculitis Clinical Research Consortium (VCRC)-Vasculitis Foundation Award and has collaborated with the VPPRN as the PI for numerous research initiatives. Tune in to learn about his COVID-19 research with the Global Rheumatology Alliance (GRA), the VascStrong study on preventing patient frailty, and his motivation behind his work. You can follow Dr. Sattui on Twitter at @SattuiSEMD.

In VF's Vasculitis Visionaries' fifteenth episode, Ben and Kaley are joined by Cleveland Clinic's Dr. Leonard Calabrese. He is both the head of Cleveland Clinic's Section of Clinical Immunology and the co-director of their Center for Vasculitis Care and Research. An immunologist by training, Dr. Calabrese works on a large number of topics, including HIV, Hepatitis C, and vasculitis. Tune in to learn about CNS vasculitis, the role of wellness in medicine, and some interesting tidbits about the exposome. You can follow Dr. Calabrese on Twitter at @LCalabreseDO.

 In VF's Vasculitis Visionaries' fourteenth episode, Ben and Kaley sit down with Dr. Christian Pagnoux from Toronto's Mount Sinai Hospital. Founder of the Canadian vasculitis research group CanVasc, Dr. Pagnoux discusses ongoing research on disease, treatments, and patient outcomes with a focus on understudied vasculitides such as EGPA. He also highlights the uses of virtual data gathering during the COVID-19 pandemic. Listen in to learn about CanVasc's updated ANCA-associated vasculitis management guidelines and the challenges of recommending medical care across diverse groups and regions.

Back for the second season, VF's Vasculitis Visionaries' thirteenth episode features Kalen Young, the Director of Research Affairs for the Vasculitis Patient-Powered Research Network (VPPRN). Join Ben, Kaley, and Kalen as they discuss COVID-19 vaccines, patient education initiatives, and research dissemination. Kalen also highlights VPPRN's work to ensure patient voices are heard at every stage of the research process. Tune in to hear how a patient question became a research publication, and check out the VPPRN website https://www.vasculitisfoundation.org/research/vpprn/ to learn more!

In VF's Vasculitis Visionaries' twelfth episode, Ben and Kaley are joined by DADA2 experts Drs. Chip Chambers and Pui Lee. Deficiency of Adenosine Deaminase 2, or DADA2, is a rare genetic disease with symptoms resembling polyarteritis nodosa (PAN). However, the diagnosis and treatment for DADA2 are quite unique. In this episode Dr. Chambers, the founder and president of the DADA2 Foundation, and Dr. Lee, a pediatric rheumatologist at Boston Children's Hospital and professor at Harvard Medical School, share their knowledge of DADA2 and hope for the future. Tune in to learn more about the disease and the big strides researchers are making, and don't forget to check out the foundation's website at www.dada2.org!

In the eleventh episode of VF's Vasculitis Visionaries, Ben and Kaley are joined by Dr. Velma Mockett, an Alberta-based mental health practitioner and licensed psychotherapist with more than 15 years of experience in the field. Dr. Mockett counsels patients on the grief and loss associated with chronic illness and uses her own experience with vasculitis to inform her work. In this episode she discusses mental health grounding techniques, the patient experience, and destigmatizing emotion. Tune in to learn about the importance of incorporating mental health care into routine vasculitis treatment and how physicians can and should discuss patient mental health.