Jordan's Guardian Angels Team
Sibling Support Coordinator
Alexis (Lexi) Levine is the Sibling Support Coordinator for Jordan's Guardian Angels. is a clinical trial associate for EQRx and a biomedical master’s candidate at New York Medical College, on her way to becoming a doctor in the hopes of finding a treatment or a cure for Jordan’s Syndrome.
Lexi’s drive comes from her younger brother Barry who was born when she was 2 with an “unspecified neurological condition,” which basically meant doctors had no idea what was ailing him. Barry and Lexi grew up extremely close, and from a young age it was clear that Lexi’s purpose was to find Barry’s diagnosis, research treatments, and advocate for disability and rare disease legislation.
Barry unfortunately passed away from this unnamed disease in 2015. Lexi was able to find Barry’s diagnosis while working with Barry’s former neurologist, by having his whole exome reanalyzed, in 2019. Barry was diagnosed as the 106th person with Jordan’s Syndrome.
Lexi is currently working with the Jordan’s Syndrome research team, and hopes to become an official member of the team, after completing her medical education.