Last week, the FSR staff enjoyed a visit from our Co-Founders Andrea and Reading Wilson, as well as Board of Directors Member Louise Perkins. The three board members joined staff for a strategic planning session focusing on the organization’s growth and trajectory in the coming years.
For those who aren’t familiar with our organization’s history, the Wilsons started the Foundation for Sarcoidosis Research in 2000 in response to the lack of accurate information about the disease and the scarcity of ongoing research efforts. Andrea herself is a patient who waited nearly a decade to receive a diagnosis.
“I’d been consistently misdiagnosed for eight years. 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.”
Fueled by their determination to find better answers and ensure others didn’t have the same experience, Andrea and Reading started the Foundation for Sarcoidosis Research and have been working tirelessly ever since to raise awareness, increase education and close the gaps in research for this disease. 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 and improving the lives of those affected. Since its establishment, FSR has funded $4 million in sarcoidosis-specific research and provided resources to tens of thousands of patients worldwide.
The meeting- which produced extremely valuable ideas and strategies for the organization- was strengthened by the presence of Louise Perkins, Chief Science Officer at Melanoma Research Alliance. Louise’s expertise spans both the nonprofit and research worlds; she has spent more than five years in nonprofits, following a long and successful research career. Her wise input contributed to well-rounded discussions on all of FSR’s programs and initiatives.
Learn more about FSR’s history and our Board of Directors.