This week, I had the honor of photographing Robert's Remembrance Memorial. Robert was a young courageous man who fought an extremely aggressive and ultra-rare (1 in 5,000,000 instance rate worldwide) disease called Fibrolamellar. Despite being in and out of the hospital, Robert always cared deeply about the problems others were facing. He took a particular interest in the homeless and was a beloved face at the UCLA Ronald Regan Medical Center.
Because of the rarity of the disease, Fibrolamellar does not get enough research attention or funding to help facilitate its cure. Robert proactively participated alongside his father in creating www.FibroSurvey.org, an extensively detailed survey to provide patients with real-world advice and answers to what treatment(s) are working and to find similarities among the afflicted to help gain information that would help researchers and scientists create new, effective treatments.
Robert has left a lasting impression on the people that knew him and the people who will benefit from his determination. He will forever be missed.