About the Foundation
Established in 2022, the VEXAS Foundation is a nonprofit turning awareness into action by supporting people affected by VEXAS, advancing research, and working toward a better future for everyone impacted by this disease.
Our mission
The VEXAS Foundation's mission is to raise awareness, improve understanding of VEXAS syndrome, and advance the search for more effective treatments and, ultimately, a cure.
Through education and advocacy, we work to increase awareness of VEXAS and make reliable information and emerging research more accessible. We collaborate with researchers and the broader medical community to deepen understanding of the disease, encourage continued scientific progress, and help turn what we learn into better diagnosis, treatment, and care.
Education is an important part of that work. We call our resource guide VEXAS 101 because it is designed to be a starting point for understanding this complex disease. We hope these resources provide a foundation for learning, asking informed questions, and continuing to build knowledge — while reminding those affected by VEXAS that they are not alone.
Three pillars of our work
VEXAS remains underrecognized, even among medical professionals. We create educational resources, including the VEXAS 101 Resource Guide, to increase awareness, improve understanding, and help shorten the path to an accurate diagnosis.
We work to advance understanding of VEXAS by sharing emerging research, collaborating with researchers and the medical community, and supporting continued scientific progress toward better treatments and, ultimately, a cure.
We listen to and amplify the experiences of people affected by VEXAS through initiatives such as the Patient Experience Survey, educational outreach, and Foundation communications, helping ensure their experiences inform our work and the broader understanding of VEXAS.
The Patient Experience Survey
In 2026 the VEXAS Foundation surveyed patients, caregivers, and families to understand the lived experience of VEXAS — from diagnosis to treatment to the questions no one thought to ask. The results shape our research priorities and advocacy work.
2026 Annual Patient & Caregiver Survey
Distributed to approximately 400 people, the survey collected 114 responses from patients and caregivers — one of the most comprehensive VEXAS syndrome patient surveys ever conducted.
Board of Directors
The foundation is led by a dedicated board of directors committed to advancing VEXAS research and patient care.
Joe Holman is President and Chair of the VEXAS Foundation Inc., the first nonprofit dedicated to improving the lives of people with VEXAS syndrome. Since assuming the presidency in January 2024, he has rebuilt the board of directors, refined the Foundation's mission, and led its research-grant evaluation and strategic planning.
He led the development of the VEXAS 101 Patient Resource Guide (2025) and the Foundation's annual patient and caregiver surveys. He represents the patient community at the 2nd and 3rd International VEXAS Workshop (Milan, September 2026) and works with clinicians and researchers at the National Institutes of Health, NYU Langone, Mayo Clinic, Sorbonne Université, and institutions across Europe and Japan.
Mr. Holman's leadership is grounded in his own experience: six years of misdiagnosis before receiving a VEXAS diagnosis in 2023, followed by multiple lines of treatment and a stem cell transplant at NYU Langone in 2025. A licensed CPA in New York, he brings that background to the Foundation's fiscal oversight and grant stewardship. He holds a BSBA from Clarion University of Pennsylvania and an MBA from Rutgers University.
Yvonne Thomson joined the VEXAS Foundation Board after years of navigating the disease alongside her husband, Mark. His medical journey began in 2017, before VEXAS had even been identified, and they spent years searching for answers before he was finally diagnosed.
That experience led Yvonne to become deeply involved in the VEXAS community and ultimately to become a Board Certified Patient Advocate. She is also an administrator of the independent VEXAS Support Facebook Group, where she helps connect and support warriors and champions from around the world and works to make reliable information and emerging research easier for families to understand and find.
Professionally, Yvonne spent much of her career in marketing, communications, and employee experience, most recently serving as Vice President of Equity, Diversity & Inclusion at OpenText. She holds a BS in Marketing and an MBA, both from Santa Clara University. She brings that experience, along with her perspective as both a champion and patient advocate, to the Foundation's work to increase awareness, strengthen the VEXAS community, and accelerate progress for people affected by the disease.
Jessica Brooks joined the VEXAS Foundation Board while caring for her husband, who was ultimately diagnosed with VEXAS in 2023. Through his diagnosis and subsequent stem cell transplant, Jessica gained valuable firsthand knowledge and expertise navigating VEXAS that she is eager to share with the broader VEXAS community.
Professionally, Jessica supports Nuveen's Global Marketing Group. She brings extensive financial services experience in brand development, technology platforms, and cross-functional collaboration, with a proven track record of transforming financial data into effective marketing materials while ensuring regulatory compliance and brand consistency.
Michael J. Linn has served on the VEXAS Foundation Board of Directors since 2022, making him one of the Foundation's longest-serving directors. He brings more than thirty years of operational, transactional, and start-up experience in the investment management industry, with a focus on alternative investments.
A C-suite executive, Mike has played an integral role in building and running institutional platforms at several investment management firms, including Varadero Capital, River Birch Capital, BlackRock / Quellos Group, Omega Advisors, and Steinhardt Partners. His work has centered on developing institutional infrastructure, strengthening operational efficiency, and navigating regulatory compliance.
Alongside his work with the VEXAS Foundation, Mike serves as a National Trustee of the Foundation Fighting Blindness. He holds a Bachelor of Arts in chemistry from Emory University, and both an MBA and a Master of Science in finance from Louisiana State University.
Don McGee began showing symptoms of VEXAS in early 2020, but was misdiagnosed more than five times by three different doctors across varied specialties — a common theme among people with VEXAS. In May 2023 he was genetically diagnosed through the University of Miami’s research program by Dr. Andrea Maderal, who immediately referred him to the National Institutes of Health (NIH) research program on VEXAS. Don joined the VEXAS Foundation Board in 2024.
Don spent just over 40 years with Merrill Lynch as a Wealth Advisor. After several years of fighting VEXAS while continuing to work, he retired at the end of 2025. In February 2026 he had a bone marrow transplant to treat his VEXAS, and he has been told that he is cured.
Don lives in Melbourne Beach, Florida with his wife, Catherine, and their dog and cat, watching their adult children with amazement. He continues to recover from his transplant and his six-year fight with VEXAS, and to reengage in life.
Medical Advisory Council — Coming soon
We're finalizing our Medical Advisory Council — a group of hematologists, rheumatologists, and geneticists with direct VEXAS expertise who will help guide our research priorities and ensure our patient resources are clinically accurate. Check back soon to meet them.
Transparency & Accountability
Trust starts with transparency. As a nonprofit serving people affected by a rare disease, we believe our supporters should be able to understand who we are, how we operate, and how resources entrusted to us are used. We are committed to being open about our leadership, finances, priorities, and progress as the Foundation grows.
The VEXAS Foundation has earned a 2026 Candid Gold Seal of Transparency, reflecting the organizational, program, financial, and leadership information we have made publicly available through our Candid nonprofit profile.
As Foundation-specific financial and impact data become available and are validated, this section will expand to include those measures.