Blog
From Advocacy to Impact: Policy Strategies to Accelerate Rare Disease Cures
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From Advocacy to Impact: Policy Strategies to Accelerate Rare Disease Cures On February 19, the Vasculitis Foundation hosted a virtual rare disease policy briefing that brought together leaders from patient advocacy organizations, research institutions, and congressional offices. The discussion focused on a critical question for the rare disease community: how can policy help accelerate the development of treatments […]
Carrying What Didn’t Break Her: Shelley Nipper’s Vasculitis Story
- GPA, Granulomatosis with polyangiitis
- Granulomatosis with Polyangiitis
Carrying What Didn’t Break Her: Shelley Nipper’s Vasculitis Story At 30 years old, Shelley lives in Chattanooga, Tennessee — not as someone defined by illness, but as someone shaped by fortitude. She described herself simply: “I’m resilient, deeply empathetic, faith-driven, and stronger than I ever planned to be.” That strength was forged early on. Six […]
Tonya Campbell’s Journey With GPA: From Diagnosis to Daily Life
- GPA, Granulomatosis with polyangiitis
- Granulomatosis with Polyangiitis
Tonya Campbell’s Journey With GPA: From Diagnosis to Daily Life Fifty-seven-year-old Tonya is a devoted teacher from Vicksburg, Mississippi, who has always centered her life around family, faith, and service. She and her husband, Carl, raised twins, Sarah and Matthew, after facing early infertility. For decades, she poured her heart into her public-school classroom and […]
A Journey of Resilience: Jim’s Path to Better Health
- microscopic polyangiitis, MPA
- Microscopic Polyangiitis
A Journey of Resilience: Jim Truskey’s Path to Better Health Known for his high energy, positive attitude and hometown pride for Buffalo, NY (Go Bills!), Jim is no stranger to health battles. He turned 69 last December and is sharing his experience with a rare and serious disease—microscopic polyangiitis (MPA). His journey began subtly in […]
Living With GPA: Tina Nardella’s Journey of Resilience, Adaptability and Hope
- GPA, Granulomatosis with polyangiitis
- Granulomatosis with Polyangiitis
Living With GPA: Tina Nardella’s Journey of Resilience, Adaptability and Hope Tina was just 24 years old when her life changed forever. Today, she is 52 and lives in Moscow, Pennsylvania, where she has worked in the legal field for more than 32 years. Married, a former competitive baton twirler and instructor, and now a […]
“Onwards and Upwards” — Samantha Feeney’s Journey to a Vasculitis Diagnosis
- GPA, Granulomatosis with polyangiitis
- Granulomatosis with Polyangiitis
“Onwards and Upwards” — Samantha Feeney’s Journey to a Vasculitis Diagnosis Samantha lives in Northamptonshire, England, with her husband Adam, whom she has been married to for 30 years. At 57, she describes herself as “outgoing, positive, artistic, and creative.” She is a mother to her daughter Alessandra (34) and a proud grandmother to four […]