Blog
Gary Naccarato: Rebuilding a Life After Neuro-Behçet’s Disease
- Behçet's
- Behçet’s Syndrome
Gary Naccarato: Rebuilding a Life After Neuro-Behçet’s Disease When life changed for Gary, a 57-year-old former Emmy Award-winning television producer in Los Angeles, it did so without warning. About two decades ago, he found himself fighting for his life against Neuro-Behçet’s disease, a rare form of vasculitis affecting the central nervous system. The illness changed […]
“Stay With the Light”: Sebastian Guzman’s Journey Through GPA and Life Beyond Diagnosis
- GPA, Granulomatosis with polyangiitis
- Granulomatosis with Polyangiitis
“Stay With the Light”: Sebastian Guzman’s Journey Through GPA and Life Beyond Diagnosis Twenty-seven-year-old Sebastian lives in Rhode Island and never imagined that a rare autoimmune disease would derail the future he had spent years building. A Christian, husband, writer, former EMT, and neuroscience student, Sebastian was accustomed to moving through life at full speed. […]
Important Information for the Vasculitis Community Regarding TAVNEOS® (avacopan)
- official statement
- Uncategorized
Official Statement Important Information for the Vasculitis Community Regarding TAVNEOS® (avacopan) April 30, 2026 The Vasculitis Foundation is aware of recent updates from the U.S. Food and Drug Administration regarding Tavneos (avacopan), including safety communications and ongoing regulatory discussions with Amgen. At this time, the information available reflects what has been publicly released by the […]
A Decade to Diagnosis: Megan Madison’s Journey with Vasculitis
- GPA, Granulomatosis with polyangiitis
- Granulomatosis with Polyangiitis
A Decade to Diagnosis: Megan Madison’s Journey with Vasculitis Megan, a 32-year-old native of Gilbert, Arizona, has always been deeply family-oriented and adventurous. Whether exploring her home state or convincing her sister and cousin to sign up for spontaneous 5Ks, she approaches life with energy and humor. “They often agree to my shenanigans before fully […]
Swimming Through Uncertainty: Caitlyn Friebe’s Journey to GPA
- GPA, Granulomatosis with polyangiitis
- Granulomatosis with Polyangiitis
Swimming Through Uncertainty: Caitlyn Friebe’s Journey to GPA For most of her life, 20-year-old Caitlyn has measured time in laps, splits, and swim seasons. A Division I collegiate swimmer from Springfield, Missouri, her world has long revolved around the discipline and demands of the pool. From a young age, she learned how to show up […]
“I Have a Disease, But I am Not Sick” – Alejandra Schoo’s Vasculitis Journey
- PAN, Polyarteritis nodosa
- Polyarteritis Nodosa
“I Have a Disease, But I am Not Sick” Alejandra Schoo’s Vasculitis Journey At 57 years old, Alejandra described herself as someone who is constantly seeking growth, both personally and professionally. Living in Buenos Aires, Argentina, with her husband, Rodrigo, and close to her adult children, Paloma and Facundo, family and emotional connection have always […]