Road Map to Wellness Educational Webinars

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The Road Map to Wellness Webinar Series offers monthly webinars featuring experts discussing issues of importance to our community. The webinars are offered live and are also recorded and made available through our Webinar Library (see below).

We thank the speakers for sharing their expertise and time and thank our donors who make this educational series possible through their generous financial support of the Vasculitis Foundation.


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UPCOMING WEBINAR: A Practical Approach to Prescribing Exercise in Chronic, Musculoskeletal Conditions

Register for the webinar HERE.

Presenter: Rebecca Manno, MD, MHS

Date: April 27, 2017 | 2:00 – 3:00 PM (EST)

Dr. Manno is an Assistant Professor of Medicine and Assistant Director of the Johns Hopkins Vasculitis Center at the Johns Hopkins University School of Medicine. Her research interests are focused on the intersection of aging and rheumatic diseases and the application of resistance exercise for patients with inflammatory disease (namely rheumatoid arthritis and vasculitis) to improve body composition, strength, function and decrease inflammation.

This presentation will review why exercise is beneficial for the treatment of inflammatory diseases and the evidence which supports such. A practical approach to prescribing exercise in chronic, musculoskeletal conditions will be discussed along with strategies to overcome barriers to exercise in vasculitis.

 

 

 

 


Webinar Library: (Scroll down to view past webinars)


When to Seek Unscheduled Medical Care

Date:  February 7, 2017

Presenter: Susan Wilson, MD ABEM, Emergency Physician and Mother of Patient with EGPA

Susan WilsonDr. Susan Wilson discussed a topic that is known to many patients with vasculitis—having to make an unscheduled visit to the hospital Emergency Department.  It can be a stressful and confusing experience especially for a patient with a rare disease.   Dr. Wilson, an Emergency Room Physician (and the mother of a patient with EGPA vasculitis) spoke about how you can be prepared for these emergency visits.

The webinar covered the following topics:

  • How to prepare for an Emergency Department (ED) visit
  • What information you should have accessible, and who you should call before going to the hospital
  • What to expect from an ED visit.   What questions will be asked, and what tests may be performed
  • Why rare disease patients are a particular challenge for Emergency Department physicians

Webinar: The VF Open House: Who we are; what we do; and how you can get involved

VF-webinar-general-2017-flashadDate:  Tuesday, January 31, 2017
Time:  12:00 noon (Eastern)
Click here to register.

Our first webinar for 2017 will be a special behind-the-scenes, “open house” focusing on the Vasculitis Foundation.  Highlights of this webinar will include:

  • Meeting the staff and learning about their roles at the VF.
  • Learning about the VF Board of Directors.
  • Discovering the many online VF resources with a real-time tour of our website, including how to find vasculitis specialists/clinics, download informational brochures, and access our archive of newsletters.
  • Understanding why the VF is a leader in funding and supporting vasculitis research throughout the world.
  • Connecting with the vasculitis patient community through our social media venues, regional conferences, and international symposia.
  • Joining the Vasculitis Patient Powered Research Network (V-PPRN).
  • Learning how to get the latest news about upcoming VF events, fundraisers, and educational opportunities.

The webinar will include a Q&A session.  We want to learn how the VF can better meet your needs so you can manage your disease.

Webinar: Achieving Your Personal Best with Vasculitis

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Topic:  Achieving Your Personal Best (PB) with Vasculitis
VF December Road Map to Wellness Webinar
December 14, 2016
12:00 p.m. Eastern
Speaker:  Brandon Hudgins, Professional Athlete with Vasculitis

In this webinar, professional athlete, Brandon Hudgins will talk about what it means to achieve your personal best despite the challenges of vasculitis.  Hudgins draws on his own story of fighting two relapses of GPA Wegener’s to become only one of a few hundred athletes to run a mile under four minutes.  Moreover,  he qualified to compete in the 2016 Olympic Trials in July in Eugene, Oregon.

Although he didn’t make the Olympics he still achieved his personal best of successfully completing more than a dozen national races throughout the 2016 season.

Hudgins believes that running is only half of his personal best.  He cites his work at raising awareness for the Vasculitis Foundation as important as his professional running career.  His passion is to inspire and educate patients with vasculitis to define their own personal best when it comes to living actively and positively.

In this webinar, Hudgins will share his personal story about dealing with the disappointment, depression, and ultimately the determination to move ahead and not let vasculitis hold him back.

Please join Brandon  for a discussion on ways to incorporate a healthy lifestyle and positive outlook in the year ahead.

Webinar: Focus on ANCA-associated Vasculitis

Richard Watts.2016Focus on ANCA-associated Vasculitis
Speaker:  Richard Watts, MA, DM, FRCP
Presented on Thursday, October 20, 2016
Click here to watch the webinar.

On October 20th, the VF hosted a webinar featuring Dr. Richard A. Watts, a Consultant Rheumatologist with Nuffield Health Ipswich Hospital, United Kingdom.  Dr. Watts discussed the recently released recommendations for the diagnosis and treatment of GPA/Wegener’s granulomatosis, microscopic polyangiitis (MPA) and EGPA/Churg-Strauss.

Dr. Watts reviewed an article in The Annals of the Rheumatic Diseases, EULAR/ERA-EDTA recommendations on the management of ANCA-associated vasculitis. This extensive article offers 15 recommendations intended for use by healthcare professionals, doctors in specialist training, medical students, pharmaceutical industries and drug regulatory organizations.  The paper reassesses standard therapy, including the use of biological agents, the prognostic value of histopathology and management of long-term complications, integrating these into treatment algorithms.

Dr. Watts will review the medical journal article and discuss some of the updates recommended for diagnosis and patient care.

To read the article:  http://ard.bmj.com/content/early/2016/06/23/annrheumdis-2016-209133.full#ref-115

Dr. Watts provides care for people with the whole range of musculoskeletal conditions including rheumatoid arthritis, osteoarthritis, ankylosing spondylitis, psoriatic arthritis, systemic lupus erythematosus, vasculitis, polymyalgia rheumatica, giant cell arteritis, osteoporosis, and fibromyalgia.
Source:  http://www.drrichardwatts.co.uk/

Webinar: Focus on Takayasu’s Arteritis

Peter Grayson 260x230Focus on Takayasu’s Arteritis
Presented on Tuesday, August 30, 2016
Click here to watch the webinar.

Dr. Grayson founded the NIAMS Translational Research Program in Vasculitis in 2013 and serves as the principal investigator for the program.  He is also an Assistant Clinical Investigator at the National Institutes of Health (NIH) and the Associate Program Director of the NIAMS Rheumatology Fellowship Training Program.

He completed a rheumatology fellowship at Boston University Medical Center and an additional two-year Vasculitis Clinical Research Consortium (VCRC) fellowship where he focused exclusively on vasculitis from both a clinical and research perspective.

During his VCRC fellowship, Dr. Grayson completed a Masters in Epidemiology and additional coursework related to bioinformatics.  He has led on several successful VCRC clinical outcome projects using data collected within VCRC observational cohorts and has an active leadership role in the VCRC Clinical Outcomes Program.  He serves as an American College of Rheumatology (ACR) representative to a major international collaboration to develop novel diagnostic and updated classification criteria in several forms of systemic vasculitis and serves as co-chair of the ACR Classification Subcommittee which oversees criteria development in rheumatology.

Dr. Grayson has received funding from the ACR and Boston University for work related to gene expression profiling in tissue and circulating blood.  His research focus includes biomarker discovery and development through gene expression profiling and other genomic techniques, disease classification, clinical epidemiology, clinical immunology, and clinical trials in vasculitis.

Webinar: CNS Vasculitis


Hajj-Ali photoCNS Vasculitis

Presented on Tuesday, June 28, 2016

Recording of this webinar COMING SOON!
Rula Hajj –Ali, MD, is an associate Professor of Medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University. She is the Associate Director of the Center for Vasculitis Care and Research at the Cleveland Clinic.

Dr. Hajj-Ali has a particular interest in vascular inflammatory disease including systemic vasculitides and primary central nervous system vasculitis. She is involved in a number of vasculitis clinical trials at Cleveland Clinic

She directs the multidisciplinary CNS vasculitis clinic at the Cleveland Clinic and she heads the research efforts for CNS vasculitis at The Fasenmyer Center of Clinical Immunology at  the Cleveland Clinic .

Dr. Hajj-Ali holds the alpha omega alpha honor and was elected as “America’s Top Physicians “and received the Aadel Askari Memorial Award by the Cleveland Society of Rheumatology ,  American Heart Association Clinical Research  and  Vasculitis Foundation  Awards.

Webinar: Behcet’s Syndrome Explained

yaziciBehcet’s Syndrome Explained
Presented on Wednesday, May 18, 2016
Click here to watch the webinar.

Yusuf Yazici, MD, is an Assistant Professor of Medicine at the New York University School of Medicine. Dr. Yazici is also the Director of the Seligman Center for Advanced Therapeutics at the NYU Hospital for Joint Diseases and Director of the Behcet’s Syndrome Evaluation, Treatment and Research Center at NYU Hospital for Joint Diseases.

Dr. Yazici earned his medical degree from Cerrahpasa Medical Faculty of Istanbul University in Istanbul, Turkey. He completed his internship and residency at Creighton University in Nebraska and his fellowship in rheumatology at the Hospital for Special Surgery of Weill Medical College of Cornell University.

His areas of interest are rheumatoid arthritis, early arthritis, patient reported outcomes, database and registry management and monitoring of arthritis patients in regard to clinical response and adverse events related to treatment and Behcet’s syndrome. He has published over 200 articles and presented at various national and international meetings over 100 times.

He divides his time between seeing patients and running the Seligman center, conducting both industry and investigator initiated trials, in the areas of RA and Behcet’s syndrome.

Webinar: Vasculitis: A 30-year Perspective on Vasculitis

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Vasculitis:  A 30-year Perspective on Vasculitis
Presented Thursday, May 5, 2016
Speaker:  Carol A. Langford, MD, MHS, FACP, Director, Center for Vasculitis Care and Research
Click here to watch the webinar.
Click here to download the presentation.

In observance of the Vasculitis Foundation’s 30th Anniversary, Dr. Langford discussed the progress and challenges for patients with vasculitis and physicians treating them over the past 30 years. In addition, Dr. Langford reviewed some of the advances made in vasculitis research and what we’ve learned and what it means for patients.

From 1994 to 2004, Dr. Langford was a senior investigator within the Immunologic Diseases Section of the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health (NIH). At the NIH, Dr. Langford’s research focused on vasculitic diseases, where she was Principal Investigator for nine vasculitis-related protocols. In 2004, Dr. Langford joined Cleveland Clinic to become Director of the Center for Vasculitis Care and Research within the Department of Rheumatic and Immunologic Diseases. Her work has continued to focus on patient care and research in vasculitic diseases, including granulomatosis with polyangiitis (Wegener’s), microscopic polyangiitis, eosinophilic granulomatosis with polyangiitis (Churg-Strauss), polyarteritis nodosa, giant cell arteritis, Takayasu’s arteritis, and other forms of vasculitis. In 2007, she was awarded an important research contract from the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the NIH for concurrent pilot studies in giant cell arteritis and Takayasu’s arteritis. She has additionally received funding from the Rare Diseases Clinical Research Network of the NIH to conduct a pilot study in granulomatosis with polyangiitis (Wegener’s) that has led to a multicenter International randomized trial. Dr. Langford is an active member of the American College of Rheumatology, where she has served on several committees.
Click here to read her complete biography and to learn about the Cleveland Clinic.

Webinar: Impact of Healthcare Utilization and Informal Caregiving for Primary Systemic Vasculitis

Carolyn_ThorpeImpact of Healthcare Utilization and Informal Caregiving for Primary Systemic Vasculitis
Presented Wednesday, April 27, 2016
Speaker:  Carolyn T. Thorpe, Ph.D., MPH
Assistant Professor, University of Pittsburgh School of Pharmacy and Therapeutics, and a Core Investigator in the Veterans Affairs Pittsburgh Healthcare System’s Center for Health Equity Research and Promotion (CHERP)
Click here to watch the webinar.
Click here to download the presentation.

Dr. Thorpe will provide an update on her VF-funded study examining the cost of healthcare for patients with vasculitis. Individuals with systemic vasculitis (SV) often require significant formal healthcare services and may rely on family members and friends to provide informal caregiving support. Until now, very little has been known about patterns of healthcare utilization and costs among SV patients, or how family and friends are impacted by serving as informal caregivers to SV patients. Characterizing the burden of formal and informal care for SV from the perspectives of patients, family members, and the U.S. healthcare system is critical to raising awareness of the illness among policy-makers and garnering additional resources to support those affected by it.

Dr. Thorpe is a health services researcher and behavioral scientist with interests in quality medication prescribing and medication adherence in older adults with multiple chronic conditions. Dr. Thorpe’s projects are aimed at understanding how we might better support medication adherence in older adults, especially those patients who are dependent on informal caregivers to help manage their daily medications. Her work in these areas has been supported by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the Agency for Healthcare Research and Quality (AHRQ), and the Department of Veterans Affairs.

Webinar: Reading Your Lab Tests and What They Mean for Your Health

Eric Hoy ResearcherProfilePresented Wednesday, March 30, 2016
Speaker: Eric Hoy,  Ph.D, S.I., A.S.C.P., Department of Medical Laboratory Sciences, the University of Texas Southwestern Medical Center, Dallas, Texas
Click here to listen to the webinar.

Dr. Hoy teaches Basic and Clinical Immunology in the Medical Laboratory Sciences program at the University of Texas Southwestern Medical Center. His major area of interest within immunology is the field of autoimmunity. His research is directed toward finding better tests for the clinical laboratory to use in the diagnosis of these diseases. Dr. Hoy serves as the medical consultant for the PAN Support Network.

Webinar: Insight into Your Lung Tests for Vasculitis

Augustine-LeeInsight into Your Lung Tests for Vasculitis
Presented Thursday, February 11, 2016

Speaker:  Dr. Augustine Lee, Pulmonary & Critical Care Medicine, Mayo Clinic- Jacksonville
Click here to watch the webinar.
Click here to download the PPT presentation.

Dr. Lee provided an overview of vasculitis in the lungs and insight into the general approach pulmonologists take in treating the disease. He discussed the tests commonly used to evaluate the lungs and lung manifestations due to the vasculitis. He defined and reviewed the many terms and acronyms that pulmonologists use including aneurysms, blood clots, pulmonary hypertension, airway involvement, stenosis, tracheomalacia, bronchitis, and nodules. He also discussed the three-pronged clinical, radiologic, and physiologic approach pulmonologists use in treating vasculitis.

Dr. Lee is an Assistant Professor of Medicine in the Departments of Critical Care Services and Pulmonary Medicine, Mayo Clinic, Jacksonville, Florida. He is the Co-Director of the LAM Clinic at the Mayo Clinic. He studied at Cornell University and the University of Maryland and went on to do his residency and fellowship at the Mayo Clinics in Jacksonville and Rochester, Minnesota. His research interests focus on Interstitial lung disease, pulmonary vasculitis and Aspiration syndromes. He has been a VF Medical Consultant for many years. He presented this talk originally at the 2015 Vasculitis International Symposium.

Webinar: Coping with Vasculitis

shehzad-niazi-15816982Coping with Vasculitis
Tuesday, January

12:00 p.m. (Eastern)
Speaker:  Dr. Shehzad Niazi, Mayo Clinic – Jacksonville

Click HERE to watch the webinar

 

We all know that a vasculitis diagnosis is stressful but, there are ways to manage stress and cope with your illness. Dr. Niazi  discussed the role of stress and how it can impact your life with vasculitis.  He offered ideas and strategies to help you develop effective coping skills that can aid in maintaining a good quality of life.  In addition he talked about developing practices of mindfulness and resilience that can help you in your journey with vasculitis.

Dr. Niazi is a consultant at Mayo Clinic Jacksonville and works with the Cancer and Transplant Centers. He is board certified by the American Board of Psychiatry and Neurology in Psychiatry and in Psychosomatic Medicine. He has completed the Specialty Certificate in Psychiatry from Royal College of Physicians and surgeons of Canada and is a Fellow of the Royal College of Physicians and Surgeons of Canada and is a Distinguished Fellow of American Psychiatric Association.  Dr. Niazi presented at the 2015 International Vasculitis Symposium in Jacksonville, Florida in June 2015.

Webinar: The Anatomy of Illness and New Perspectives

GarySHoffman.staffPhoto.1.13The Anatomy of Illness and New Perspectives
Tuesday, December 15, 2015

1:00 p.m. (Eastern)
Speaker:  Gary S. Hoffman, M.D., M.S., MACR, Center for Vasculitis Care and Research

Click HERE to watch the webinar.

Dr. Hoffman presented the final educational webinar of 2015.  During his presentation, Dr. Hoffman addressed some of the important questions that patients ask:

How did I get vasculitis?
Why me?
What is the cause of vasculitis?
What do I have to do for a cure?

He explored the makeup of diseases and some of the new ideas on the cutting edge of research, including the role of the immune system, genetics, infectious diseases, mechanisms and patterns of disease.  Dr. Hoffman also discussed the role of microbiomes and how they interact with genetics, gender, age and immune status to produce disease.
Dr. Hoffman joined the Cleveland Clinic in 1992 and is the founder of the Cleveland Clinic Center for Vasculitis Care and Research.  Dr. Hoffman led investigations of new therapies for vasculitis and coordinated the first international multi-center studies of diagnostic laboratory and imaging tools to assess vasculitis disease activity.   These multi-center studies proved that research involving large cohorts of patients could be done successfully by collaborating with other vasculitis researchers around the world.

In January 2015, Dr. Hoffman retired from patient care to focus on research.

Webinar: The Genetics of Vasculitis and Current Research

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Presented:  November 18, 2015
Speaker: Amr H. Sawalha, MD
Click here to watch the webinar.

Dr. Sawalha is Professor of Internal Medicine, and the Marvin and Betty Danto Research Professor of Connective Tissue Research at the University of Michigan, Department of Internal Medicine, Division of Rheumatology, in Ann Arbor. His research focus is the genetics and epigenetics of complex autoimmune and inflammatory diseases, including lupus and systemic vasculitis. He has built a unique investigative consortium that includes physicians and researchers in Turkey, Italy, Germany, The Netherlands, Japan, and Korea to study the genetic contribution to Behçet’s disease and Takayasu’s arteritis.

Webinar: Vasculitis, Fertility, and Pregnancy: How to build a family despite having vasculitis!

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Speaker: Megan, Clowse M.D., MPH
Presented October 29, 2015
Click here to watch the webinar. 

One of the most common questions women with vasculitis ask is how this disease will affect their ability to have children. Unfortunately, there is limited reliable information regarding pregnancy with vasculitis which is of great concern for both patients and physicians. During the webinar, Dr. Clowse discusses current research addressing fertility and pregnancy for women with vasculitis.

Dr. Clowse is an Associate Professor of Medicine at Duke University and Director of the Duke Autoimmunity in Pregnancy Clinic.  In this clinic she has followed over 300 pregnancies in women with rheumatic disease over the last 8 years.  She began her career  studying pregnancy in women with lupus during her Rheumatology Fellowship at Johns Hopkins Hospital.  She now focuses on improving the management of rheumatic disease, including vasculitis, prior to and during pregnancy.  Her primary goal is to help women with rheumatic disease build the families that they desire, despite their illness.

Dr. Clowse is the principal investigator of the Vasculitis Pregnancy Registry (V-PREG), which was launched on November 6, 2015.   V-PREG will be an electronic, patient-reported prospective pregnancy registry. Every woman  who enrolls in this study brings knowledge and better understanding one step closer. We recognize that many women with vasculitis want to participate in research but cannot participate because of a variety of barriers. That is why V-PREG and the V-PPRN have made it easy for women to participate in this important research online.

Together, we can help expectant mothers with vasculitis. Clinical research can help answer the most important questions, and is a critical tool to improve outcomes for expectant mothers with vasculitis.

Webinar:  Back To School with Vasculitis: Managing your drugs, treatments, social life, doctors’ appointments and classes!

Seo and Brittni webinar artwork
Speakers:  Phil Seo, MD and Brittni Riemer
Presented:  Monday, August 24, 2015

Going back to school after a long summer is never easy for anyone.  Whether it’s elementary, middle, or high school the prospect of facing another semester can be tough.  Moreover, if you’re going away to college, you have a whole other set of challenges to face.  Dr. Phil Seo, director of the Johns Hopkins Vasculitis Center, partnered with Brittni Riemer, a college student and patient with microscopic polyangiitis (MPA), for a webinar on school and vasculitis.  During the webinar, Dr. Seo and Brittni shared practical advice on health information, managing medications, and when to seek professional assistance on campus.

Webinar:  Long-term Issues in ANCA-associated Vasculitis: What’s Beyond Year One?

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Speaker:  Rennie Rhee, MD, University of Pennsylvania Health System
Presented Thursday, July 23, 2015

Now in her second year of her VF-funded Vasculitis Fellowship at the University of Pennsylvania, Dr. Rennie Rhee works with Drs. Peter Merkel and Antoine Sreih, among others, to understand more about vasculitis.  In particular, Dr. Rhee hopes to determine whether outcomes, such as survival and development of end-stage renal disease, are improving in patients with ANCA-associated vasculitis over the past 25 years.  She also is interested in the impact of early diagnosis and treatment advances on these outcomes.

“Understanding the past helps us move forward,” Dr. Rhee explains.  “We want to know if all the advances in the field of vasculitis are translating into improvements in patient-important outcomes in a real-world setting.  We can also evaluate which has had a larger contribution to better outcomes: earlier diagnosis or advances in therapy.  Understanding this will help identify areas in need of more research.”

Webinar:  Living Well With Vasculitis

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Presented Wednesday, May 13, 2015
Celeste Castillo Lee, University of Michigan

Celeste Lee is Program Manager for the Patient and Family Centered Care at the University of Michigan Health System.  She has extensive experience in patient and family centered care initiatives and brings a unique outlook as both a patient advisor and as a patient with End Stage Renal Disease (ESRD).  Celeste has had GPA/Wegener’s for 31 years and is committed to improving quality of care and quality of life for those with ESRD and serves on several state and national patient advocacy boards.  She also serves as a patient-partner on the Vasculitis Patient-Powered Research Network (V-PPRN).

Webinar:  Eye Involvement in Vasculitis

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Presented Thursday, April 23, 2015
James A. Garrity, MD, Department of Ophthalmology, Mayo Clinic, Rochester, Minnesota

Dr. Garrity is a longtime member of the VF Medical Consultants and Scientific Advisory Board and is the Whitney and Betty MacMillan Professor of Ophthalmology in the Mayo Medical School.  Dr. Garrity will discuss how vasculitis can affect the eyes in patients with the disease.  Dr. Garrity is the author or coauthor of more than 100 publications and is a scientific reviewer for several peer-review journals.  His clinical practice and research interests involve vasculitis, Graves’ disease, ophthalmopathy and orbital diseases.

Webinar:  Steroids:  A User’s Guide

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Presented Monday, March 16, 2015
Lindsay Lally, MD, Division of Rheumatology, Hospital for Special Surgeries, New York City, New York
Click here to download the PPT presentation. 


Dr. Lindsay Lally, Vasculitis Fellow at the Hospital for Special Surgery, New York City, discusses the use of prednisone in the treatment of vasculitis. The drug helps control inflammation in the affected blood vessels but side effects of prednisone, including weight gain, diabetes, and bone thinning, can be severe, especially if taken for a long time.

Dr. Lally received her bachelor of arts from Princeton University and her medical degree from Weill Cornell Medical College. She completed her residency in Internal Medicine at New York Presbyterian Hospital – Weill Cornell Medical Center followed by her Rheumatology Fellowship at Hospital for Special Surgery.  Dr. Lally specializes in the care of patients with various rheumatic conditions including vasculitis, systemic lupus erythematosus, scleroderma and rheumatoid arthritis and has a particular interest in the systemic vasculitides.  Dr. Lally is actively involved as an investigator in numerous clinical and translational studies focusing on vasculitis.  She has been the recipient of several awards including a Vasculitis Foundation Research Grant and the American College of Rheumatology Distinguished Fellow Award.

Webinar:  Patient Empowerment:  Become an empowered patient who can make a difference in vasculitis research!

New VF Webinar Page graphic
Presented Friday, February 20, 2015

George Casey, MBA, Treasurer, VF Board of Directors;  Kalen Young, MA, Network Manager V-PPRN

The Vasculitis Foundation and the Vasculitis Clinical Research Consortium are proud to present a new research network for clinical research in vasculitis.

The key to improving diagnosis, finding better treatments, and increasing disease understanding is research.  There are a variety of barriers to conducting clinical vasculitis research. The Vasculitis Patient-Powered Research Network (V-PPRN) has an innovative blueprint for conducting vasculitis research that will address some of those key barriers to conducting research. During our next Road Map to Wellness webinar, we will explore how the Vasculitis Patient-Powered Research Network is innovating clinical vasculitis research.

The goal of the V-PPRN research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.

The V-PPRN is a patient-powered research network, the philosophy is simple: conduct high-quality research for patients WITH patients. Learn more about what it means to be a patient-powered research Network during the webinar. 

Webinar:  Road Map to Wellness:  How Do We Get There?

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Presented Wednesday, January 21, 2015
Linde Sifuentes, CSCS, NSCA, CPT, Mayo Clinic, Rochester, Minnesota


Mr. Linde Sifuentes, a Worksite Wellness Coordinator with the Mayo Clinic, Rochester, Minnesota, will discuss the concept of wellness: the importance of eating well, being physically active, learning and using relaxation techniques and developing sleep habits to achieve and maintain good health. He will also talk about the importance of setting realistic goals and discovering meaning and purpose in your own life when faced with a chronic illness such as vasculitis.

At the Mayo Clinic, he developed and co-leads the Worksite Wellness Champion program, leads wellness messaging campaigns throughout the campus, and regularly presents to work areas to promote employee wellness to Mayo’s 32,000+ employees based in Rochester. Prior to joining the Mayo Clinic team, Linde worked at a health and wellness facility while he earned his Bachelor of Science degree in Corporate Fitness from Minot State University in Minot, North Dakota.  Click here to watch a video of Mr. Sifuentes talking about “Time to get Walking”

Webinar:  The Road Map to Wellness Webinar for Caregivers

Delesha Miller Carpenter.
Presented Thursday, November 20, 2014
Lesha Carpenter, PhD, Eshelman School of Pharmacy, University of North Carolina  – Chapel Hill

Click here to download Dr. Carpenter’s PPT presentation.

Caregivers are a vital part of a vasculitis patient’s life.  And yet, there are not many resources for this dedicated group.  Dr. Lesha Carpenter has published on this important topic and is conducting a Vasculitis Foundation-funded study about caregivers.  Join us for a webinar on this important group when Dr. Carpenter will offer tips, encouragement and resources for caregivers. Dr. Carpenter is an assistant professor at the Eshelman School of Pharmacy at the University of North Carolina at Chapel Hill.  She is also a research fellow at the UNC Cecil G. Sheps Center for Health Services Research.

Dr. Carpenter’s research focuses on how vasculitis impacts patients and their social network members, including spouses, family, and friends.  She has published 10 peer-reviewed articles and 1 book chapter about vasculitis; several of these publications have explored how vasculitis affects patients’ quality of life.  She has also developed two educational podcasts to help patients teach their friends about vasculitis.  As a co-investigator on the Vasculitis Foundation’s Research Initiative to Assess Disease Impact (V-RIDI) grant, she will be collecting survey data to understand the role that caregivers play in the health and well-being of patients.

Dr. Carpenter earned her PhD in Health Behavior and Health Education for UNC and her masters of science in public health from the University of South Carolina. She is also a Certified Respiratory Therapist.  To learn more about Dr. Carpenter’s research click here.  

Webinar:  Introducing the New Vasculitis Program at the National Institutes of Health

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Presented Wednesday, September 24, 2014
Peter C. Grayson, MD, MSc, National Institutes of Health, NIAMS, Bethesda, Maryland
Click here to download the PowerPoint slide presentation.

This webinar features Dr. Peter Grayson, the founder and principal investigator of the Translational Program in Vasculitis, established in 2013, at the National Institute of Arthritis and Musculoskeletal and Skin Diseases, part of the National Institutes of Health (NIH).  Additionally Dr. Grayson is a Lawrence Shulman Scholar in Translational Medicine at NIH and is associate program director of the NIAMS Rheumatology Fellowship Training Program.

Dr. Grayson completed a fellowship with the Vasculitis Clinical Research Consortium (VCRC), where he focused on research and clinical aspects of vasculitis.  He has led several successful clinical outcomes projects and holds a leadership role in that VCRC program.  With the American College of Rheumatology, he serves as the representative to a major international collaboration to develop novel diagnostic and updated classification criteria in several forms of systemic vasculitis.

His research focus includes biomarker discovery and development through gene expression profiling and other genomic techniques, disease classification, clinical epidemiology and immunology, and clinical trials in vasculitis.

Webinar:  Medications:  The Good, the Bad, the Ugly

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Presented Tuesday, July 22, 2014
Tanaz Kermani, MD, Division of Rheumatology, UCLA, Los Angeles, California
Click here to download the PowerPoint slide presentation.

Vasculitis patients take a variety of medicines to treat and manage their disease.  What are the benefits and risks of each?  Dr. Kermani, a UCLA Medical Center rheumatologist and vasculitis physician, reviews the medicines most commonly used to treat vasculitis and discusses “the good, the bad and the ugly” aspects of each. 

Dr. Kermani is an Assistant Clinical Professor in the Division of Rheumatology at University of California Los Angeles.  She completed her internship, residency, rheumatology fellowship and, an additional 2 years of vasculitis training at the Mayo Clinic.  She sees patients full time at the UCLA Santa Monica office including referrals for vasculitis.  Her research interest is in large-vessel vasculitis where she has several publications. She has ongoing collaborations with vasculitis researchers and serves on the Vasculitis Patient-Powered Research Network (V-PPRN) and the Vasculitis Foundation. Click here to read her bio.

Webinar:  The Science of Vasculitis Research

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Presented Wednesday, May 14, 2014
Paul A. Monach, MD, PhD, Director, Boston University Vasculitis Center, Boston, Massachusetts
Click here to download the PowerPoint slide presentation.

May is Vasculitis Awareness Month, and vasculitis patients and families are keenly aware of the continued need for research into the diseases’ causes and improved therapies.

Where are we now with the science of vasculitis? What research is currently being conducted and what questions is it addressing? What do scientists want to learn about the diseases? What have we learned about biomarkers over the past decade? What about autoimmunity? What is the role of genetics? What about the epidemiology of the disease?

Dr. Paul Monach, director of the Boston University Vasculitis Center, describes research initiatives, including projects funded by the Vasculitis Foundation. Dr. Monach serves as a principal investigator in the Vasculitis Clinical Research Consortium (VCRC).  The VCRC is comprised of several vasculitis centers across North America and is dedicated to conducting clinical research in vasculitis.  Dr. Monach sees patients with all forms of vasculitis as well as general rheumatology patients in the outpatient rheumatology clinic.  His specific research interests in vasculitis concern biomarkers and genetics. Click here to view Dr. Monach’s complete bio.

Webinar:  Creating Effective Communication Between Patients and Physicians

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Presented Wednesday, March 26, 2014
Ronald Falk, MD, Director, UNC Kidney Center, University of North Carolina – Chapel Hill
Click here to download the PPT slide presentation.

Vasculitis patients face special communication challenges because they often see a number of specialists and need to manage communication between members of their physician team.  Dr. Ronald Falk, Chief, Division of Nephrology and Hypertension and Director of the UNC Kidney Center,  offers tips and strategies to enhance your communication practices with your team of physicians.

Dr. Falk’s research probes questions focused on immune mediated kidney diseases, especially glomerulonephritis. His clinical and basic science interests include both ANCA glomerulonephritis and small vessel vasculitis (SVV).  A central objective of Falk’s research is elucidating the causes of ANCA necrotizing and crescentic glomerulonephritis. Unraveling the cause of this disease requires considering a number of factors involved in the development of ANCA glomerulonephritis. Falk conceptualizes this process as opening the vasculitis lock with a key that has a number of “ridges and valleys” analogous to those factors that contribute to the development of this autoimmune disease. Click here to view Dr. Falk’s biography.

Webinar:  The Road Map to Wellness (2014 – webinar #1)

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Presented Wednesday, January 29, 2014
Antoine G. Sreih, MD, Perelman School of Medicine, University of Pennsylvania, Philadelphia
Click here to download the PPT slide presentation.

It’s a new year, a time when we resolve to eat better, exercise more, lower our stress, and to manage our vasculitis more carefully/effectively.  What are the most important health practices to maintain and how to incorporate them into daily living?  What guideposts should be in your road map to wellness?  What is an anti-inflammatory diet and should you consider it?  What about stress management?  How can you increase physical activity while accommodating physical symptoms? What can you do about sleep and fatigue issues?

Join Dr. Antoine G. Sreih as he outlines best healthy practices for vasculitis patients and offers online and print resources.  Dr. Sreih is Assistant Professor of Clinical Medicine Division of Rheumatology Department of Medicine Perelman School of Medicine University of Pennsylvania.  He joined the Division of Rheumatology, University of Pennsylvania in July 2013.  Prior to his move to Philadelphia, he was the director of the Rush Vasculitis Clinic, Rush University Medical Center, Chicago, Illinois.  His clinical and research interests include vasculitis, Systemic Lupus Erythematosus and autoimmunity.  He has received research support from the NIH and the American College of Rheumatology Research & Education Foundation.  His work has been published in journals such as Arthritis and Rheumatology, Journal of Clinical Rheumatology, Journal of Autoimmunity, and Pharmacotherapy.  Dr. Sreih is a member of the Vasculitis Clinical Research Consortium Steering Committee, which is headquartered at the University of Pennsylvania.