named programs · 3 · from sources
What they call their work
Clinical Awareness and Outreach
Initiative to increase awareness of VEXAS syndrome among healthcare professionals by promoting education and sharing treatment options.
Research Grant Program
Provides funding to scientists and research labs, such as the David Beck Lab at NYU, to advance understanding of VEXAS syndrome and develop novel treatments.
VEXAS 101 Resource Guide
Educational guide created to inform patients, families, and healthcare professionals about VEXAS syndrome, aiming to shorten diagnosis time and improve clinical care.
activities · 2 groups
What they do
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Rare Genetic Disease Research and Advocacy 2 activities
- Conducting education and awareness activities for patients, healthcare professionals, and the publicProvides education and awareness about VEXAS syndrome to patients, families, healthcare professionals, and the general public through resource materials and direct information sharing. Created the VEXAS Syndrome Resource Guide in 2025 to support understanding of the condition and available treatments.
- Supporting and disseminating VEXAS syndrome researchConducts, supports, and shares scientific research on VEXAS syndrome, including publishing patient-reported data from the VEXAS Patient Experience Survey and providing access to updates on research advances and treatment options.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding research on VEXAS syndrome through scientific grantsAwards grants to support groundbreaking research on VEXAS syndrome, including studies aimed at understanding genetic mechanisms, developing novel treatments, and improving patient outcomes. Specifically funds research at the David Beck Lab at NYU Grossman School of Medicine.
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financials · form 990EZ · fy2024
revenue
Total revenue$54K
Contributions & grants$48K90%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$44K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out$38K
balance sheet
Total assets$10K
Cash—
Investments—
Liabilities—
Net assets$10K
2 years on record · 2023–2024 · YoY revenue +8476.2%
leadership · form 990 part vii · fy2024
Who runs it
board members · 3
- Don McGee — Director
- Michael J Linn — Director
- Yvonne Thomson — Director
relationships · 10
Who they work with
- Cleveland Clinic Partner — Clinic with experience treating VEXAS patients, listed as a supportive medical center.
- David B. Beck, MD, PhD Partner — Principal investigator of a key research lab funded by the VEXAS Foundation and recognized for his role in discovering VEXAS syndrome.
- David Beck Lab – NYU Partner — Collaborates on reporting research related to UBA1 inactivation mechanisms in VEXAS syndrome.
- EBMT Partner — Partnered on a multicenter study evaluating allogeneic hematopoietic cell transplantation for VEXAS syndrome.
- Mayo Clinic Partner — Clinic with experience treating VEXAS patients, listed as a supportive medical center.
- NYU Langone Health Partner — Clinic with experience treating VEXAS patients, listed as a supportive medical center.
- National Institute of Health Partner — Clinic with experience treating VEXAS patients, listed as a supportive medical center.
- National Institutes of Health Partner — Collaborates with NYU Langone on research projects funded or supported through the VEXAS Foundation network.
- New York University Grossman School of Medicine Partner — Hosts the David Beck Lab, a research program supported by the VEXAS Foundation to study the genetics and mechanisms of VEXAS syndrome.
- Relapsing Polychondritis Foundation Partner — Provided consultation and financial support for the creation and ongoing operations of the VEXAS Foundation and collaborates on research initiatives.
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Patient Empowerment Through Information Access 5 orgsmethodology: patient-empowerment-through-informationBy providing accessible, up-to-date information on diagnosis, treatment, and research, the foundation shortens time to diagnosis and improves care for VEXAS patients, because informed patients and clinicians make better, faster decisions.shared approach: Knowledge Empowerment →
- Balanced Research Portfolio Strategymethodology: balanced research portfolioBy combining support for proven research methods with high-risk, high-reward projects, the foundation accelerates progress in VEXAS syndrome treatment, because diverse research approaches increase the likelihood of breakthroughs.
- Scientist-Centered Research Accelerationmethodology: scientist-centered research fundingBy funding exceptional and innovative scientists, the foundation accelerates breakthrough research in VEXAS syndrome, because scientific talent and creativity are key drivers of progress in rare disease research.