After speaking to Science Desk Journalist, Richard Harris at the Global Genes Patient Advocacy Summit, Alex's 12 year diagnostic journey was featured on NPR "Morning Edition". Read full story here:

Harris R. (2019) “A boy’s mysterious illness leads his family on a diagnostic odyssey”,  NPR. 19 October. Available at: https://www.npr.org/sections/health-shots/2019/10/16/769462793/a-boys-mysterious-illness-leads-his-family-on-a-diagnostic-odyssey