Passionate Patient Advocate. Cherished Wife, Sister, Daughter, and Mother. Faithful Friend

Living Well with Vasculitis Scholarship

Celeste Benedict Castillo Lee

022811_NEWS_Celeste Castillo Lee_MRM

Born July 26, 1965 | Married July 15, 2000 | Died February 9, 2017


The Vasculitis Foundation is pleased to welcome applications for the Living Well with Vasculitis Scholarship to attend the 2017 International Vasculitis Symposium.

symposium 2017

This scholarship program is in honor of Celeste Lee a life-long patient advocate and patient living with Granulomatosis with Polyangiitis.  At the age of 17 Celeste was diagnosed with GPA which shut down her kidneys the summer before her senior year of high school.  The kidney involvement transitioned her from a college-seeking young woman into a lifelong ESRD (end stage renal disease) patient.  In 1983 Celeste attended college as a student on hemodialysis.

In 1986 Celeste received an amazing gift of life, a transplant.  However, in 1995 when the kidney failed, she was devastatingly transitioned back to dialysis. Celeste created an exceptional life with her mental fortitude and unparalleled passion for patient and family-centered care.  She dedicated her professional and personal life to employing the principals of patient and family-centered care: dignity & respect; sharing information; being an active participant in one’s health.

C.LeeFor more than three decades, Celeste helped healthcare providers to partner with patients and families in order to envision a future of patient and family-centered healthcare.  She served as faculty member at the Institute for Patient and Family-Centered Care (PFCC), PFCC program manager at the University of Michigan Health System, and former Chief of Staff to the President and CEO of Duke University Health System.  In addition to these roles, Celeste simultaneously served as patient advisor, peer mentor, and advocate and Board Member of numerous non-profit health organizations, professional societies, government and regulatory agencies.  The initiatives she spearheaded aimed to raise awareness and improve the care experiences of patients.

Celeste’s health has taken her on a powerful journey and she handled every turn with grace, dignity, and positive mental attitude. Celeste touched many lives and spread hope and joy everywhere she went.

To honor Celeste and the impact she has had on the vasculitis community, the Vasculitis Foundation and the Vasculitis Patient-Powered Research Network have established a scholarship for a patient with vasculitis with kidney involvement to attend the 2017 International Vasculitis Symposium.

The scholarship will cover the symposium registration, travel, and lodging.