Monica Coenraads’ involvement with Rett Syndrome began the day her then two-year-old daughter was diagnosed with the disorder. A year later, in 1999, she co-founded the Rett Syndrome Research Foundation (RSRF) and held the position of Scientific Director during the eight years of the Foundation¹s drive to stimulate scientific interest and research in Rett Syndrome, culminating with the groundbreaking work in 2007 which demonstrated the first global reversal of symptoms in preclinical models of the disorder. Monica launched the Rett Syndrome Research Trust in late 2008 to pursue the next steps from that milestone. As Executive Director she oversees all aspects of the organization, including day-to-day operations, strategic direction, fundraising and communications. With input from her advisors and the scientific community at large, Monica sets and executes the Trust¹s research agenda.
In 2010 she co-founded the Rett Syndrome Research Trust UK and serves as a trustee (organization now called Reverse Rett). In 2013 she joined the Advisory Council for The Research Acceleration and Innovation Network (TRAIN) of FasterCures. In 2014 Monica was asked to serve on the Advisory Board of SFARI.org. She is a founding trustee of the American Brain
Coalition. She was awarded Redbook magazine’s Mother & Shaker Award, alongside Katie Couric and Matilda Raffa Cuomo.
In 2015 Monica received an honorary doctoral degree from the University of Massachusetts Medical School.