Positive Exposure: Maya & Julian

MAYA

Maya was diagnosed with Marfan Syndrome at age 8, a condition that has shaped her perspective on life. Since she was 13, she has advocated for awareness and support for those affected by this disorder. Now a cardiogenetic counselor, she helps individuals and families facing similar challenges. Outside work, Maya enjoys spending time with her husband, their four children, and two cats. She loves family activities and is an avid reader. 

MARFAN SYNDROME

JULIAN

My name is Julian. I love to make videos and write stories for My Julian Universe storyline. I was born with Marfan Syndrome and have taught all of my school classes about it since I was in first grade. I play alto saxophone and love cats. I have 2 cats: Willow who is energetic, cute, and crazy, and Skye who is chill, fluffy and loves you or is terrified of you (this changes every day). I have over 600 pictures of them. I love everything space and math. My birthday is Dec. 4 AKA National Cookie Day. My mommy is a genetic counselor, and my dad is an Evil scientist with his electrical engineering lab. I don’t know what I want to be when I grow up, engineer, film maker, writer, scientist? I love to learn and teach people (if I like what I’m teaching). I love going to the Marfan conference every year. I hope to meet someone in school who also has Marfan.

MARFAN SYNDROME