The VF Board of Directors is responsible for setting the strategic direction, policy and agenda for the Vasculitis Foundation. The Board governs on behalf of the VF members and ensures appropriate organizational performance which includes fulfilling the mission of the organization, determining its future direction, and managing the organization’s fiscal health. The Board’s role is to ensure that the VF establishes and maintains the trust of the vasculitis community by being clear in its mission, prudent and ethical in its activities, and accountable for its actions.
Suzanne DePaolis, President
Los Gatos, California
Suzanne’s passion for education led her through a career in teaching, but a diagnosis of EGPA abruptly changed that life path. She found herself in a position to channel her teaching to directly help other patients understand and manage their illness.
During the 2017 Symposium, Suzanne was publicly recognized for her outstanding work at helping educate patients and raise awareness about vasculitis. When the VF Board invited her to join, she readily accepted.
“ I bring a unique point of view which is the patient perspective,” said Suzanne. “I understand what patients need, and I also understand what we may need in the future. Sharing these patient needs to the Board is very important. I’m both honored and excited to be in that role.”
Don Nagle, Treasurer
Glen Rock, New Jersey
Fifteen years ago, at the age of 19, Don’s daughter, Sarah, was diagnosed with vasculitis. Today, she continues to manage her illness and live a relatively normal life with her family. Don credits the VF with being an invaluable source of information and support.
“The VF exposed us to vasculitis experts, and to other patients,” says Don. “They gave us hope to manage her illness. I joined the Board because I believe in how the VF improves patient lives.”
Don recently retired as Chief Financial Officer and Senior Vice President for the Asia Society. “I’m excited to bring my knowledge of non-profits, as well as my financial experience to help the VF fulfill its mission.”
Allison Lint, Secretary
Overland Park, Kansas
Allison joined the VF Board in October 2018. She is a professional musician, performer, teacher, and clinician. She was diagnosed with GPA/formerly Wegener’s at the age of 17, and now, as a 30-year old, provides a link between the adult world of VF management and young adults, a population which increases every year.
In 2011, Allison established Violin for Vasculitis, Inc. (VF4), a nonprofit awareness organization. Through V4V, her goal is to travel to all 50 states, giving free recitals in public venues to promote rare disease awareness. VF4 gained its nonprofit 501(c)(3) status in 2016, and to date has presented 35 events in 23 states. Through the years, she has amassed experience organizing events in various venues from start to finish, making personal contact with community leadership as well as vasculitis patients, and navigating the process to gain nonprofit status with the IRS.
Sara Baird Amodio, MSW, EdD
Dr. Sara Baird Amodio has experience as an educational administrator, educational psychologist, and a private consultant for international non-governmental organizations. Sara holds an MSW from Stockholm University in Sweden with an emphasis on organizational development and administration. Her Doctorate in Education from Regent University specialized in assessment, programming and evaluation, and curriculum development.
Sara has served as a principal, a K-8 school counselor post-September 11 in the Washington, D.C. area, and a middle school teacher. She was invited to serve on the Design for Excellence evaluation team in the Diocese of Arlington (Washington, D.C. metropolitan area) and a member of the Steering Committee for the Archdiocese of Denver’s Accreditation Team. She was recognized by U.S. Senator Michael Bennet, former Superintendent of Denver Public Schools, for her service to youth and received an Administrator Award through the Asian Education Advisory Council for Denver Public Schools. She currently serves on founding committee for the Longmont Performing Arts Initiative and on the board for the Longmont Youth Symphony in Colorado. Sara is a former assistant professor with the Master of Nonprofit Management Program at Regis University where she coordinated the online program. Currently, she is the founder and president of Launch Educational Services, LLC, specializing in nonprofit educational consultancy services.
Sara was diagnosed with EGPA in 2015.
Kevin Byram, MD
Dr. Byram is Director of the Vanderbilt Vasculitis Clinic and Assistant Professor of Medicine, Division of Rheumatology at Vanderbilt University’s School of Medicine. He has long held an interest in vasculitis. “Vasculitis syndromes are really interesting,” he said, “but the patients with these diseases are even more fascinating. I’m amazed by their resiliency.”
As Director of the Vanderbilt Vasculitis Clinic, Dr. Byram and his team are establishing cohorts of patients with vasculitis so that they can study disease-related outcomes. For the past few years, he has also been a member of the American College of Rheumatology’s (ACR) Vasculitis Guidelines Committee on the literature review team. Once the recommendations are published, the VF and ACR will team up to disseminate the guidelines this calendar year.
“The VF Board of Directors opportunity is exciting because it’s patient focused,” he said, “and it’s another way to positively impact vasculitis patients on a policy and fundraising level.”
In addition, having benefited from the support of the VF through his training, he wants to ensure those opportunities are present for other trainees and investigators interested in vasculitis.
For someone with an extensive professional career in the health care, it took Caz a surprisingly long time after her diagnosis of eosinophilic granulomatosis with polyangiitis to seek out information and support. That’s why she’s so passionate now about connecting newly-diagnosed patients with the VF and the online vasculitis patient community.
Since her first VF Symposium, Caz has immersed herself in all things related to vasculitis. She reads every article she can find, attends numerous VF educational events, actively monitors a large number of Facebook groups with participants from around the world, and shares information about the disease, its impacts, and advances in treatment with other patients, her friends, and family.
Caz hopes to add value to the Board from her nearly 25 years of professional experience with health insurance and how it intersects with the provision of health care. “I started my career in health education and am interested in continuing to contribute to patient and physician education in the realm of vasculitis,” she explained. “I also expect to be involved in a new committee forming to provide document review, as I have done a lot of analysis of complex material in my career working in health care policy.”
Caz has a bachelor’s degree in history and master’s in public administration with an emphasis in health care administration. She spent most of her health care career at Kaiser Permanente, a large integrated model health care system, overseeing operational and compliance activity around contracts, benefits, legislation, and regulation. “For much of my time at Kaiser Permanente, I was the Director of Legislative Policy, then the Director of Health Plan Licensing, so I have a lot of experience in the legal and regulatory oversight of health care delivery,” she said.
A resident of Lafayette, California, Caz has been married for 31 years and has one son.
“I’m pleased to learn that the Vasculitis Foundation is being so thoughtful about how to continue the important work of the organization in the midst of the COVID-19 pandemic. There’s a lot of creative thinking happening about how to continue to connect with our patient and physician communities, and provide support and education, even with significant limitations in our ability to gather in person,” Caz said. “I’m excited about the prospect of joining the Board and contributing more officially to an organization that is so important to me.”
Anisha B. Dua, MD, MPH
Dr. Dua is Director of the Northwestern Vasculitis Center; Associate Professor of Medicine, Rheumatology, and Director of the Fellowship Program at Northwestern University’s Feinberg School of Medicine. She has been involved with the VF for many years, participating in patient symposia, reviewing grants, and leading the
patient panel for the vasculitis guidelines in collaboration with the ACR. These opportunities have allowed her to fully engage with experts in vasculitis research and patient care, VF members, and a wide variety of patients.
“I am passionate about caring for patients with vasculitis and educating my patients and my peers in order to try and achieve earlier diagnoses, and targeted and comprehensive management,” she said. As a VF board member, Dr. Dua would like to focus her efforts on the Research and Fellowship Committee. “I believe directing funding and support for viable and innovative projects will be critical in moving the field of vasculitis forward,” she said. “Encouraging research and educating our patients and providers, as well as collaborating with other subspecialists to pool our expertise, are central to consistently improving the landscape for vasculitis care and management.”
Dr. Dua hopes to contribute to the leadership, education, and patient care missions of the VF and help develop new ways of presenting and disseminating information to improve the delivery of care and access to resources for patients.
Jacquelyn (Jacque) Eidson
Blue Springs, Missouri
Jacque wanted to serve on the VF Board of Directors because she knows firsthand the impact that vasculitis has on patients, and those who love them. Jacque’s father-in-law was diagnosed with vasculitis nearly 15 years ago and she believes his medical journey was much different from patients who live in larger metropolitan areas.
Jacque’s father-in-law lives in a rural community of about 12,000 people in mid-Missouri. He had been experiencing symptoms for a couple of years, and although the local hospital offered excellent care, he is now also under the care of the University of Kansas Medical Center. Not long after that, he was also diagnosed with inclusion-body myositis, a debilitating, inflammatory muscle disease. He is also currently battling lymphoma for the second time.
“Needless to say,” Jacque said, “it has been a difficult 13 years.” After her father-in-law was diagnosed with vasculitis in 2006, Jacque and her family left Kansas City and moved to their rural hometown to be closer to him, and stayed there until 2018. Jacque served on the board of the local hospital. She has volunteered on local, state and national.
Jacque has over 20 years’ experience in business development, compliance and higher education, and holds a master’s in business administration and a bachelor’s in accounting. She has been married for 21 years, has four children, and resides in Kansas City. She is currently finishing her final year of a PhD program in organizational psychology at Grand Canyon University. In addition, she is an adjunct professor of business at Missouri Valley College.
Jacque hopes to leverage her business education and background to assist with the financial aspects of the VF. For patients in small communities, finding a specialist is often a detour to a larger city or university medical center.
Jacque says her father-in-law’s arduous journey played a role in her decision to serve on the board. “I feel passionate about providing a voice to those in rural communities,” she says, “and I don’t want them to be overlooked.”
Brian is the Chief Financial Officer at Sani-Tech West in Camarillo. His wife, Jen, was diagnosed with eosinophilic granulomatosis polyangiitis (formerly Churg-Strauss Syndrome) in 2010. Despite going to the best doctors and trying all available treatments, Jen passed away in November 2018, one week before her 47th birthday.
“I lost my wife, soulmate and best friend that afternoon,” he said. “I cannot think of a better cause that is closer to my heart that also honors Jen and her brave fight.” Brian hopes to take everything he learned and experienced from those years and use it to help others. “I also hope to use my professional background to help the VF grow,” he said. Brian has 23 years’ experience working for nonprofits and more than half of his career has been at the executive level.
He has also served on other boards, including the Make-A-Wish® Foundation for the Central (California) Valley, the Fresno Chaffee Zoo, and his son Brandon’s soccer club, and has volunteered for various organizations over the years.
“Add in that I was a spouse and caregiver to someone who lost her life to vasculitis, and I come in with the ability to be a board member from many perspectives. I have passion for the cause,” Brian said.
Peter C. Grayson, MD, MSC
Dr. Grayson is the founder and principal investigator of the Translational Program in Vasculitis, established in 2013, and is the associate program director of the NIAMS Rheumatology Fellowship Training Program. 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.
Dr. Grayson is also an investigator with the Vasculitis Clinical Research Consortium (VCRC), which is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of vasculitis. The goal to improve the care of patients with vasculitis.
Click here to watch a video of Dr. Grayson discussing his research.
Victor joined the board in October 2018. He had an Allstate Insurance Agency for 34 years in Stafford before selling the business and retiring in April 2018. Victor and his wife, Brenda, both volunteer as “Faces of Vasculitis” and have shared the story of his diagnosis and the impact that it had on both of their lives through his Extraordinary Patient video. He is always on the lookout for opportunities to share the knowledge he has learned from the VF and how it has positively impacted my life.
Victor has volunteered for many different organizations including the Boy Scouts of America, the Wild Turkey Federation, and his church. He is also active on several social media groups and is always happy to talk and mentor other patients.
Jason M. Springer, MD, MS
Chair, Research Committee
Kansas City, Kansas
Dr. Springer is an Assistant Professor in Rheumatology and director of the Kansas University Medical Center Vasculitis Clinic. Prior to starting medical school, his father was diagnosed with vasculitis after developing symptoms of numbness in his feet. Although treated aggressively, he passed away six months after the initial diagnosis and the family was left with many unanswered questions.
During Dr. Springer’s residency in Internal Medicine at the University of Utah, he met and worked with Dr. Curry Koening, the director of the Utah Vasculitis Center. Dr. Koening encouraged Dr. Springer to complete his general rheumatology and Vasculitis fellowship at the Cleveland Clinic Center for Vasculitis Care and Research.
In 2013 he joined the KU Medical Center and in 2015 officially opened the KU Vasculitis Clinic. The center provides patient care and also participates in multi-center research studies. Dr. Springer has compiled a team of specialists to care for patients with vasculitis. In addition, he hosts one-day regional conferences for patients and family members every other year.
Jason joined the VF Board of Directors in 2011 after being diagnosed with GPA/Wegener’s. He has served on the Marketing and Awareness Committees and his goal is to use his expertise to drive awareness of vasculitis and increase funding for research toward a cure. Jason shared, “I am a big believer in the power of community. Working together, we will have a greater chance of achieving our goals. I look forward to meeting more of the members and levering the power of this passionate community.”
Jason is also a co-organizer (with fellow board member, Karen Hirsch) of the annual Chicago Rally in the Alley held each fall. The event has raised over $160,000 over the past five years. The bowling event brings together patients, families, and supporters to raise awareness of vasculitis and funds for the VF.