On October 28, 2024, the Foundation for Sarcoidosis Research (FSR) hosted a groundbreaking Externally Led Patient-Focused Drug Development (EL-PFDD) meeting on sarcoidosis with the U.S. Food and Drug Administration (FDA). This virtual event attracted nearly 350...
“I was diagnosed with Cutaneous Sarcoidosis in July of 2011. When I was diagnosed, I was alone and didn’t know what this disease was much less how to pronounce it correctly, which I’m still working on. Ha. After Googling Sarcoidosis, I was a tad bit scared; I...
These last few weeks have been very rough on me. I feel as if I have been going through both a spiritual and existential crisis. Sarcoidosis has completely shifted and changed my life and how I view and live in this world. The word “silence” has been both...
Before my heart disease journey began in Spring 2019, I was a passionate and dedicated educator and led a dynamic and fulfilling life. I was very active and busy with work, church, and my beloved Sorority of Delta Sigma Sorority, Inc. I never had any health issues. I...
My journey with neurosarcoidosis began on May 5, 2013, when I woke up in the morning with the worst headache of my life, light sensitivity, and double vision. After an evaluation by a neuro-ophthalmologist, a negative MRI, a Lumbar Puncture (which relieved my...
26 Patient Volunteer Leaders representing 16 states and 17 hospitals joined the Foundation for Sarcoidosis Research (FSR) at the inaugural FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) Volunteer Patient Leadership Advanced Training Conference held at Cleveland...
The Foundation for Sarcoidosis Research is part of a 27-member coalition dedicated to improving access to supplemental oxygen for all in need. Chasta Posey, FSR Patient Advocate, Patient Navigator, Member of the FSR Women of Color Advisory Committee, and FSR Global...
Why is finding your community important? After a diagnosis that changes your life, you need people who understand the journey you are about to embark on and find strength and support from others. After getting my sarcoidosis diagnosis I felt alone, I have family,...
Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure and improving care for sarcoidosis patients, conducted a two-day training of patient Volunteer Leaders to collaborate with and support the FSR...
My journey with Interstitial Lung Disease (ILD) started about 15 years ago, although I did not know it at the time, nor did the physicians who were then treating me. At an annual physical, at the age of 46, I mentioned that my knees were a bit sore after physical...
