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Vasculitis Visionaries

Vasculitis Visionaries

By Ben Wilson

Hosts: Kaley Beins and Ben Wilson
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Special Episode: Best of Vasculitis Visionaries Podcasts, Season 2

Vasculitis VisionariesAug 04, 2021

00:00
39:18
Episode 19: CARRA and Building a Pediatric Vasculitis Website with Dr. Linda Wagner-Weiner

Episode 19: CARRA and Building a Pediatric Vasculitis Website with Dr. Linda Wagner-Weiner

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.

Dec 08, 202141:41
Episode 18: Pediatric AAV with Dr. Jessica Bloom

Episode 18: Pediatric AAV with Dr. Jessica Bloom

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.

Sep 01, 202136:53
Special Episode: Best of Vasculitis Visionaries Podcasts, Season 2

Special Episode: Best of Vasculitis Visionaries Podcasts, Season 2

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.

Aug 04, 202139:18
Episode 17: Patient Education and Vasculitis Registries with Dr. Aurore Fifi-Mah

Episode 17: Patient Education and Vasculitis Registries with Dr. Aurore 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.

Jul 01, 202144:06
Episode 16: Multidisciplinary Collaboration and Vasculitis with Dr. Sebastian Sattui

Episode 16: Multidisciplinary Collaboration and Vasculitis with Dr. Sebastian Sattui

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.

Jun 02, 202144:21
Episode 15: Infectious Disease and Vasculitis with Dr. Leonard Calabrese

Episode 15: Infectious Disease and Vasculitis with Dr. Leonard Calabrese

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.

Apr 30, 202141:45
Episode 14: Research Priorities and Future Directions with Dr. Christian Pagnoux

Episode 14: Research Priorities and Future Directions with Dr. Christian Pagnoux

 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.

Apr 01, 202141:48
Episode 13: Patient-Centered Research with Kalen Young
Mar 01, 202140:00
Episode 12: DADA2 with Drs. Chip Chambers and Pui Lee
Sep 18, 202053:03
Episode 11: Mental Health and Vasculitis with Dr. Velma Mockett

Episode 11: Mental Health and Vasculitis with Dr. Velma Mockett

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.

Sep 04, 202001:11:24
Episode 10: Virtual Health and Vasculitis with Drs. Anisha Dua and Kevin Byram

Episode 10: Virtual Health and Vasculitis with Drs. Anisha Dua and Kevin Byram

In VF's Vasculitis Visionaries' tenth episode, Ben and Kaley are joined by Drs. Anisha Dua and Kevin Byram, two recent additions to the VF Board. Dr. Dua, based out of Northwestern, and Dr. Byram, based out of Vanderbilt, discuss how the pandemic is shaping rheumatology education and patient treatment. They share their experiences with telehealth, the Virtual Rheumatology Learning Collaborative (ViRL), and the role of the Vasculitis Foundation in patient and physician education and practice. Listen in to learn more about access to health information, their ongoing work in vasculitis, and their approach to health care as the pandemic continues.

Aug 21, 202042:34
Episode 9: Evidence-Based Medicine and Vasculitis with Dr. Mike Putman

Episode 9: Evidence-Based Medicine and Vasculitis with Dr. Mike Putman

 For VF's Vasculitis Visionaries' ninth episode, Ben and Kaley are joined by Dr. Mike Putman, previously a clinical instructor of medicine at Northwestern University who will soon be headed to the Medical College of Wisconsin to direct their vasculitis program. In this episode, Dr. Putman discusses his ongoing research on tissue cell identification in giant cell arteritis (GCA) and the implications for early diagnosis, better understanding of disease mechanisms, and identification of disease subtypes. He also discusses the purpose of the soon-to-be-released ACR Guidelines and their role in improving and standardizing patient treatment. Check out Episode 9 to hear about evidence-based medicine, how Dr. Putman's construction side project is going, and how social media can be a tool for medical education, and don't forget to follow Dr. Putman on Twitter (@EBRheum)!

Aug 07, 202043:28
Episode 8: Medical History and Vasculitis with Dr. Eric L. Matteson

Episode 8: Medical History and Vasculitis with Dr. Eric L. Matteson

For VF's Vasculitis Visionaries' eighth episode, Ben and Kaley are joined by Dr. Eric Matteson, professor emeritus of medicine and rheumatology at Mayo Clinic. In this episode, Dr. Matteson briefly discusses his current research on the implications of COVID-19 infection on autoimmune diseases with lung involvement. He then dives into the history of vasculitis and other rheumatological diseases and explains why naming diseases after pathologies, not people, is important to diagnosis and treatment. The episode concludes with an overview of Dr. Matteson's experience as a rheumatologist in New Zealand. Tune in to Episode 8 to learn about patient-oriented, ethical practice, Ben's perspective on steroid treatment, and how different healthcare systems can impact care.

Jul 24, 202052:51
SPECIAL Episode: Best of Vasculitis Visionaries Podcasts

SPECIAL Episode: Best of Vasculitis Visionaries Podcasts

Ben and Kaley will return with a new Vasculitis Visionaries podcast interview on July 24. Until then, we hope you will listen to a special edition featuring a compilation of interview segments from the series.  They have selected some of the most exciting, engaging, and informative highlights from past episodes.

Discussions include why Relapsing Polychondritis may provide valuable clues to understanding other vasculitic diseases, why the microbiome is a new frontier for vasculitis researchers, and how a couple became medical detectives to help diagnosis the wife's unexplainable symptoms. You will also learn how integrative medicine is playing a role in the treatment and management of vasculitis.

Jul 10, 202037:54
Episode 7 Part 2: Integrative Medicine and Patient Needs with Dr. Will Pendergraft and Brandon Hudgins

Episode 7 Part 2: Integrative Medicine and Patient Needs with Dr. Will Pendergraft and Brandon Hudgins

In the second segment of VF's Vasculitis Visionaries' seventh episode, Ben and Kaley again host Dr. Pendergraft, this time with one of his patients, Brandon Hudgins. A return guest from Episode 5 Pt. 2, Brandon is an elite athlete and running coach with a background in kinesiology. He also has GPA vasculitis. After hearing Dr. Pendergraft's talk at the 2019 Vasculitis Foundation Symposium, Brandon sought him out to discuss integrative treatment options.  Tune into the second part of Episode 7 to hear how Dr. Pendergraft individualizes his patients' care, how Brandon's unique status shapes his health goals, and what successful treatment means to them both.

Jun 26, 202042:27
SPECIAL Episode: Relapsing Polychondritis, Ongoing Research, and the VF Pajama Party with Dr. Peter Grayson

SPECIAL Episode: Relapsing Polychondritis, Ongoing Research, and the VF Pajama Party with Dr. Peter Grayson

In this special episode of VF's Vasculitis Visionaries, Ben and Kaley speak with well-known vasculitis researcher, Dr. Peter Grayson. A staple at VF events and symposiums, Dr. Grayson is the head of the Vasculitis Translational Research Program (VTRP) at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). Dr. Grayson discusses the VTRP team's ongoing research, including a new cohort study on relapsing polychondritis (RP), a disease characterized by cartilage inflammation that presents similarly to GPA. He also gives Ben and Kaley a lesson in "PET scans 101" and discusses an upcoming research announcement that could be a real gamechanger. Don't miss this special episode or Dr. Grayson's challenge to Ben regarding the upcoming VF PJ Party!

Jun 17, 202051:15
Episode 7 Part 1: Integrative Medicine and Vasculitis with Drs. Julie McGregor and Will Pendergraft

Episode 7 Part 1: Integrative Medicine and Vasculitis with Drs. Julie McGregor and Will Pendergraft

In part one of VF's Vasculitis Visionaries' seventh episode, Ben and Kaley have the opportunity to speak with Dr. Julie McGregor and Dr. Will Pendergraft from the Integrative Medical Clinic of North Carolina (IMCNC). Both experts in autoimmune disease and vasculitis, Drs. McGregor and Pendergraft discuss their holistic view of health. Unlike more pharmaceutical-centric treatments, treatment plans at the IMCNC look beyond clinical measures of disease activity to patients' understanding of their own health. Tune in to hear how Drs. McGregor and Pendergraft balance traditional clinical care and principles of behavioral health to care for the whole patient.

May 29, 202037:08
Episode 6: Medical Education and Vasculitis with Dr. Aamir Hussain

Episode 6: Medical Education and Vasculitis with Dr. Aamir Hussain

In the sixth episode of VF's Vasculitis Visionaries, Ben and Kaley are joined by Dr. Aamir Hussain, a current resident in internal medicine at Hofstra University who will soon begin a dermatology residency at Georgetown University. Dr. Hussain, who received his Master of Public Policy degree and medical degree from the University of Chicago, explains how his interest in vasculitis started and how current changes to medical education, including the shift of the United States Medical Licensing Examination Step 1 to pass/fail, may affect how medical students learn about rare diseases. Listen in to hear about vasculitic rashes, healthcare policy, and the role the Vasculitis Foundation has played in Dr. Hussain's education.

May 15, 202039:24
Episode 5, Part 2: Self-Advocacy and Coping with Young Adults with Vasculitis

Episode 5, Part 2: Self-Advocacy and Coping with Young Adults with Vasculitis

In the second segment of this two-part episode of VF's Vasculitis Visionaries, Ben and Kaley join other young adults with vasculitis to discuss self-advocacy and best practices during the COVID-19 pandemic. Guests Brandon Hudgins, Allison Lint Ross, and Kate Tierney share their vasculitis stories and how they have taken back control of their lives and perspectives. They share their insights into initiatives like Victory Over Vasculitis and Violin for Vasculitis and emphasize the importance of mentoring newly diagnosed vasculitis patients. Tune in to hear how immunocompromised vasculitis patients are staying positive, despite the challenges and fears posed by the pandemic. For more patient perspectives on vasculitis, check out Sara Amodio's podcast The Ride.

May 01, 202053:55
Episode 5, Part 1: Self-Advocacy and Diagnosis with Dr. Mark and Nancy Anderson

Episode 5, Part 1: Self-Advocacy and Diagnosis with Dr. Mark and Nancy Anderson

In the first segment of this two-part episode of VF's Vasculitis Visionaries, Ben and Kaley speak with Mark and Nancy Anderson, two medical professionals who met at Massachusetts General Hospital and have been personally affected by vasculitis. Dr. Anderson was one of two first place winners of the 2019 VF Recognizing Excellence in Diagnostics (V-RED) award, which recognized the active role he played in his wife Nancy's diagnosis with MPA vasculitis. Mark and Nancy discuss the difficulty in getting the correct diagnosis and highlight ways in which our healthcare system could better serve patients. Join Ben, Kaley, and the Andersons as they explore the meaning of patient advocacy and health from personal experience.

Apr 17, 202043:22
Episode 4: PET Scans and Imaging Technologies with Dr. Kaitlin Quinn

Episode 4: PET Scans and Imaging Technologies with Dr. Kaitlin Quinn

In the fourth episode of VF's Vasculitis Visionaries, Ben and Kaley join Dr. Kaitlin Quinn, an NIH researcher and lead of the Medstar Georgetown University Hospital vasculitis clinic who also happens to be Kaley's rheumatologist. Dr. Quinn describes how her interest in caring for patients with vasculitis began and explains her ongoing research on large-vessel vasculitis. She also discusses her recent publication on PET scan timing and disease activity and the implications for predicting flares. Tune in to hear Ben and Dr. Quinn discuss the future of vasculitis treatment and Kaley nerd out over an unexpected connection to a current public health celebrity.

Apr 03, 202040:16
Episode 3: Vasculitis and the Microbiome with Dr. Rennie Rhee

Episode 3: Vasculitis and the Microbiome with Dr. Rennie Rhee

In the third episode of VF's Vasculitis Visionaries, Ben and Kaley talk with Dr. Rennie Rhee, an assistant professor of medicine and researcher at the University of Pennsylvania. Dr. Rhee explains the connection between research and the patient experience and delves into her cutting-edge work on the nasal microbiome in patients with vasculitis. Dr. Rhee also discusses the implications of ongoing clinical trials for the future of targeted vasculitis treatment. Join Ben and Kaley as they host their first medical podcast guest and learn about the importance of "going from the bedside to the bench" and back again.

Mar 20, 202049:02
Episode 2: Joyce Kullman, Executive Director of the Vasculitis Foundation

Episode 2: Joyce Kullman, Executive Director of the Vasculitis Foundation

In the second episode of VF’s Vasculitis Visionaries, Ben and Kaley welcome Joyce Kullman, ED of the Vasculitis Foundation. Joyce discusses how her family’s emphasis on volunteering and her father’s vasculitis journey inspired her to get more involved with VF. She traces VF from its days of a few volunteers around a kitchen table to its current status as a well-recognized organization partnering with the American College of Rheumatology. Joyce also describes opportunities for patient and practitioner involvement with VF and the benefits its ongoing work provides. Join Joyce, Ben, and Kaley as they discuss advocacy, research, and moving forward as a community.

Mar 20, 202037:22
Episode 1: Introductions!

Episode 1: Introductions!

In the first episode of VF’s Vasculitis Visionaries, co-hosts and vasculitis patients Ben Wilson (EGPA) and Kaley Beins (GPA) introduce themselves, their vasculitis journeys, and the motivation behind the podcast initiative. Hear about Ben’s career as a sports broadcaster and Kaley’s work in environmental health and disease development. Join them on their journey to blend patient perspectives with practitioner expertise.

Mar 16, 202026:53