James was diagnosed at 3 1/2 years in 2007. He has participated in multiple studies including the twin/sibling study, natural history and COVID studies at NIH and the CDASI study in Philadelphia. He is a strong believer in research participation, fully understanding that his current treatments are a result of the research participants who came before him.
James is also a member of Cure JM’s Young Adult Advocates Council. In 2024, he represented Cure JM as a featured keynote speaker at the NIH Rare Disease Day.