Randy’s Story

Randy Pherson served as a CIA analyst and manager for 28 years, retiring in 2000 as National Intelligence Officer for Latin America. Since retirement, Randy and his wife, Kathy, developed and taught Structured Analytic Techniques, critical thinking, and presentation skills to analysts in government, private industry, and academia.

For more than 15 years, Randy was plagued with worsening health symptoms, ranging from rashes, swelling on his fingers, to fevers and shortness of breath. After years of delay and misdiagnosis in the US, a medical crisis during an Iceland vacation in 2021 landed him in a Reykjavik hospital for nearly three weeks. This led to treatment by insightful doctors, who set him on a path to a formal diagnosis in February 2022 of VEXAS, a little understood disease discovered only 16 months earlier. As one of about 500 in the US clinically diagnosed with VEXAS, Randy’s journey was featured last September in The Washington Post.

Many patients have experienced the difficulty of navigating the US medical system for routine care. Randy’s challenges in obtaining a diagnosis and his struggle to find effective treatment fed his determination to help and educate both patients and providers about VEXAS and other newly defined “hematoinflammatory” disorders. Randy’s goal was to establish a non-profit to raise provider awareness and knowledge and serve as a resource for patient and provider education, communication, and networking. He envisioned a virtual forum where patients and their families could air concerns, share coping strategies, and even get advice from knowledgeable medical specialists.

On the day he died, Randy was to have begun planning for the foundation with Dr. Marcela Ferrada, currently working as a Clinical Associate Professor at the University of Maryland, seeing patients – like herself – who suffer from a rare disease. Dr. Ferrada, Kathy, and close friend Dr. Jan Baker promised Randy they would make his dream a reality.