Luis Arias, MS

Volunteer, Senior Development Officer

Luis Arias was diagnosed with Marfan syndrome in 1986 and has remained a source of support for families affected by Marfan syndrome and related disorders since then. He was the first in his family to be diagnosed with this condition and has had a series of health issues related to his diagnosis, but believes strongly that quality of life encompasses more than surgeries or medications.  He has worked tirelessly to support the voices of young people in a variety of contexts, whether it’s refugee communities, court rooms, or teens and young adults at the Annual Marfan Conference- and will answer any questions, or requests with transparency and honesty as best he can. He’s also a dad.