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.
Sara Baird Amodio, MSW, EdD, President
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 as a member of the Steering Committee for the Archdiocese of Denver’s Accreditation Team. She has been recognized by U.S. Senator Michael Bennet, the former Superintendent of Denver Public Schools, for her service to youth and she has received an Administrator Award through the Asian Education Advisory Council for Denver Public Schools. She currently serves on the founding committee for the Longmont Performing Arts Initiative, as well as the board for the Longmont Youth Symphony in Colorado.
Sara is a former assistant professor for the Master of Nonprofit Management Program at Regis University where she coordinated its 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.
Suzanne DePaolis, Past 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,” Suzanne explains. “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 patients’ 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.”
Brian Goldman, VP of Resource Development
Brian is the Chief Financial Officer at Sani-Tech West in Camarillo. His wife, Jen, was diagnosed with EGPA (formerly Churg-Strauss Syndrome) in 2010. Despite going to the best doctors and trying all of the available treatments, Jen passed away in November 2018, just one week before her 47th birthday.
“I lost my wife, soulmate and best friend that afternoon,” Brian says. “I cannot think of a better cause that is closer to my heart that also honors Jen and her brave fight.”
Brian hopes to use everything he learned and experienced during those eight years to help others. “I also hope to use my professional background to help the VF grow,” he explains, referring to his 23 years of experience working for nonprofits. More than half of which has been at the executive level.
He also has experience serving 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. In addition, he 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,” Brian promises. “I have passion for the cause.”
Allison Ross, 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. Now, as a 30-year old, she provides a link between the adult world of VF management and young adults, a population which is increasingly being diagnosed each 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 and perform 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.
Over the years, Allison has amassed experience in organizing events in various venues from start to finish, making personal contact with community leadership and local vasculitis patients and navigating the process to gain nonprofit status with the IRS.
Jocelyn Ashford wanted to serve on the VF’s Board of Directors because she has always appreciated the thoughtful, collaborative, and practical approach the VF has taken in addressing the needs of the vasculitis community. She feels that the VF is open to trying new approaches, considers new angles, and makes the work fun. “Today, there’s a tremendous opportunity ahead for the VF and it is in a position to redefine how they’ll serve the community,” Jocelyn said. “I want to be part of making a positive impact in the vasculitis community, while working with a great group of individuals.”
Jocelyn joined the board in February 2021. Her current role at BridgeBio Company in San Francisco, California, is in Global Advocacy Relations building relationships with various rare and not-so-rare disease communities around the world. She does this by listening and learning from personal experiences to identify unmet needs and find ways industry can partner with the community to address those needs. “I have the opportunity to work on all types of projects—from clinical trial design and support, to building community, to education, policy, and beyond,” she said. “I love to say that I get to be the heart of my company.”
Jocelyn’s first exposure to the vasculitis community was working in marketing, supporting rituximab. In this role, she focused on understanding the healthcare provider perspective of granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA). “In my next role, I led patient advocacy efforts in vasculitis (GPA, MPA and giant cell arteritis) and had the opportunity to learn about the broader community and build a relationship with the VF that resulted in various programs designed to address unmet need,” she said.
Jocelyn is looking forward to being part of the strategic planning process by creating a clear focus for the VF moving forward and setting the VF up to make the most meaningful impact possible. “The areas I’m passionate about are around providing services and support that consider the diverse needs of the community and establishing a path to continued, deliberate growth for the VF,” she added.
On a personal level, Jocelyn lives in Oakland, California, and has two children—Elise, 21, and Rahsaan, Jr., 19.
Kevin Byram, MD
Dr. Byram is the Director of the Vanderbilt Vasculitis Clinic and an Assistant Professor of Medicine, Division of Rheumatology, at Vanderbilt University’s School of Medicine. He has long held an interest in vasculitis, saying: “Vasculitis syndromes are really interesting, but the patients with these diseases are even more fascinating. I’m amazed by their resiliency.”
As the 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. In recent years, he has also been a member of the American College of Rheumatology’s (ACR) Vasculitis Guidelines Committee as part of the literature review team.
“The VF Board of Directors opportunity is exciting because it’s patient focused,” he says. “It’s another way to positively impact vasculitis patients on a policy and fundraising level.”
Additionally, Dr. Byram wants to use his position on the VF Board to ensure that there are opportunities available for trainees and investigators interested in vasculitis, having himself benefited from the VF’s support during his own training.
For someone with an extensive career in health care, it took Caz a surprisingly long time after receiving her EGPA diagnosis to seek out information and support. That’s why she has become so passionate 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 vasculitis. She reads every article, attends numerous VF educational events, actively monitors multiple global Facebook groups and spreads awareness about vasculitis, its impacts, and advances in treatment with her family, friends and other patients.
Caz brings nearly 25 years of professional experience in health insurance, and its intersection with the provision of health care, to the VF Board. “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 explains. “I’m excited about the prospect of joining the Board and contributing more officially to an organization that is so important to me.”
Caz has a bachelor’s degree in history and her master’s degree in public administration with an emphasis in health care administration. She spent most of her career at Kaiser Permanente overseeing operational and compliance activity around contracts, benefits, legislation and regulation.
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,” Caz shares. “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.”
Anisha B. Dua, MD, MPH
Dr. Dua is the Director of the Northwestern Vasculitis Center, an Associate Professor of Medicine, Rheumatology, as well as the Director of the Fellowship Program at Northwestern University’s Feinberg School of Medicine.
She has also been extensively involved with the VF for years, participating in patient symposia, reviewing grants and leading the patient panel for the vasculitis guidelines in collaboration with the ACR. “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 explains. And it is that passion, combined with the opportunities presented to her through the VF, that have allowed her to fully engage with experts in vasculitis research and patient care, VF members and a wide variety of patients.
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 says. “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 is proud to serve on the VF Board of Directors because she knows first-hand 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 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, he received another diagnosis of inclusion-body myositis, a debilitating, inflammatory muscle disease. He is also battling lymphoma for the second time. “Needless to say,” Jacque says, “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 to move back to their rural hometown to be closer to him. Once there, Jacque started serving on the board of the local hospital. She also began volunteering at the local, state and national level.
Jacque brings over 20 years’ experience in business development, compliance and higher education to the VF Board. She holds a master’s degree in business administration and a bachelor’s degree in accounting. She is currently finishing her final year of a PhD program in organizational psychology at Grand Canyon University, while simultaneously working as an adjunct professor of business at Missouri Valley College.
Her father-in-law’s arduous journey played a huge role in her decision to serve on the board, where Jacque hopes to leverage her business education background to assist with the financial aspects of the VF. She especially wants to focus on patients in small communities, where finding a specialist often means taking a detour to a larger city or university medical center. “I feel passionate about providing a voice to those in rural communities,” she says. “I don’t want them to be overlooked.”
Jacque has been married for 21 years, has four children and currently resides in Kansas City.
Victor is always on the lookout for opportunities to share the knowledge he has learned from the VF and how it has positively impacted his life. So it’s no surprise that he joined the VF Board in October 2018, just seven months after selling his Stafford-based Allstate Insurance Agency and entering into retirement.
He comes to the Board eager to mentor other patients. He brings with him his experience volunteering with multiple different organizations, including the Boy Scouts of America, the Wild Turkey Federation and his church. He also has experience actively spreading vasculitis awareness through his participation in several social media groups.
Get to know Victor, and his wife Brenda, as they share the story of his diagnosis and the impact that it had on both of their lives in his Extraordinary Patient video.
Jason joined the VF Board of Directors in 2011 after being diagnosed with GPA/Wegener’s. As a patient himself, he understands the importance of spreading awareness about a disease as rare as vasculitis.
His hope is to use his expertise to advocate for additional research toward finding a cure. “I am a big believer in the power of community,” he explains. “Working together, we will have a greater chance of achieving our goals. I look forward to meeting more of the members and leveraging the power of this passionate community.”
Jason currently serves on the Marketing and Awareness Committees, where he uses his experience as a co-organizer of the annual Chicago Rally in the Alley, a bowling event that brings together patients, families and supporters to raise money and awareness for vasculitis, to continue to support the VF and its mission.