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 Foundation’s 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. Together with RSRT’s Chief Scientific Office, Randy Carpenter, and with input from advisors and the scientific community at large, Monica sets and executes the Trust’s research agenda.
In 2010 she co-founded the Rett Syndrome Research Trust UK and serves as a trustee (organization now called Reverse Rett). She is an Advisor to the Tri-State Rett Syndrome Center at the Children’s Hospital at Montefiore. In 2014 Monica was asked to serve on the Advisory Board of SFARI.org In 2013 she joined the Advisory Council for The Research Acceleration and Innovation Network (TRAIN) of FasterCures. She is also a member of the Patients Count Leadership Council. In 2016 Monica was invited to join the UNC Autism Research Center Advisory Board. 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 2006, the Howard Hughes Medical Institute highlighted Monica’s efforts in the November issue of the HHMI Bulletin.
In 2015 Monica received an honorary doctoral degree from the University of Massachusetts Medical School.
Under Monica’s leadership at RSRF and RSRT over $63 million has been raised for Rett Syndrome/MECP2 research.
While at RSRF Monica conceived of the Strollathon program and chaired the first event in Stamford, CT. The event was subsequently inherited by IRSF after the RSRF/IRSA merger where it remains a signature event.
Monica was born in Italy and emigrated to the US in her childhood. The family traveled extensively due to her father’s employment and lived in numerous locations both within the US and Europe. Monica has an MBA with an emphasis in International Business from the University of Connecticut. She lives in Trumbull, Connecticut with her husband, Pieter, and their three children.