History of FSR
After eight years of seeking answers surrounding a daily routine of pain, fatigue, and seemingly unconnected symptoms, a long-awaited diagnosis should have provided some degree of relief. “I’d been consistently misdiagnosed for eight years,” Andrea Wilson recalls. “I was told it was multiple sclerosis. I was told it was a brain tumor. I was told it was just stress — that I was freaking out, that it was nothing.” It was only when a chest X-ray revealed massive scarring in her lungs that doctors determined that she suffered from multi-system sarcoidosis.
She immediately began a search for resources to guide her treatment decisions and cope with her diagnosis to no avail. She was shocked by the lack of knowledge and frustrated with the deep gap in research within this rare disease. With great determination to end the isolation often felt by sarcoidosis patients, Andrea and her husband Reading set out in 2000 to build a non-profit to promote awareness and accelerate research for sarcoidosis.
Throughout her illness, which included everything from a heart attack and two strokes to the many treatments she has endured, she kept her promise to help others battling this often overlooked disease. Until 2009, she led FSR in raising funds and facilitating collaborations toward research for and promoting awareness to help not only sarcoidosis patients but also their families and caregivers.
The Foundation for Sarcoidosis Research is now the leading nonprofit organization dedicated to finding a cure for sarcoidosis. Since its establishment, FSR has fostered $4 million in sarcoidosis-specific research and provided resources to tens of thousands of patients worldwide.