The Freed Family

Amber Freed is the mom of twins Maxwell and Riley, but she is also a rare disease advocate seeking treatment for Maxwell’s genetic disease, SLCA1. When her twins were born using IVF, she thought that was the toughest battle of her life. But Amber quickly learned that she needed to become a warrior in the ultra-rare disease space to save Maxwell. Now, 5 years later and having raised over 6 million dollars, she is a pioneer mom seeking a novel gene therapy treatment called ASO at the n- Lorem Foundation and an inspiration to rare disease parents around the world.