Danae' was diagnosed with Homocystinuria (HCU) in 1995 at the age of 10, after her younger brothers lenses became dislocated. After suffering several complications due to late diagnosis, lack of information, and difficulty complying with treatment, she’ decided to research patient organizations for those in the metabolic community.
In 2011, she discovered the PKU Organization of Illinois and began to take part in the various activities they had to offer. It was through the PKU Organization of Illinois that she was able to network with others with HCU. That same year she ventured to Denver, Colorado for a conference on HCU, where she met others with Homocystinuria and those actively involved in the community. In 2014, she joined the PKU Organization of Illinois becoming the editor for the PKU Press. Here, she was in charge of developing flyers and interesting articles that the metabolic community may be interested in. In 2016, she was elected the President of the PKU Organization of Illinois where she works to coordinate fundraising and educational events for those in the metabolic community.
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