Grant Enables In-Home Tutorials for Parents of Children with Rett Syndrome

Funded by Greater Cincinnati Foundation & United Way of Greater Cincinnati’s COVID-19 Regional Response Fund.

Children born with Rett syndrome appear to develop typically during their first years, showing no signs that their genes harbor a devastating disease. Between 6 and 18 months of age, development slows, and they lose skills they had acquired. As they get older, their symptoms resemble autism, cerebral palsy and Parkinson’s disease. They are unable to talk and suffer from breathing difficulties, epilepsy and scoliosis. They require lifelong care for this highly complex and debilitating disorder for which there is no treatment. Yet.

Since 1999, International Rett Syndrome Foundation (IRSF) has been relentlessly working to change that and to improve the lives of those affected by Rett syndrome – not only here in Cincinnati, but throughout the United States and across the globe. IRSF provides support services and programs to Rett syndrome families and also funds the research needed to develop treatments and ultimately a cure for this devastating disorder.

As a result of COVID-19, Rett syndrome families quarantined at home, without critical speech and physical therapy services or care teams. In response, IRSF is working with researchers to develop and release in-home tutorials, teaching parents how to implement movement, stretching, speech therapy and physical therapy at home.

“We are incredibly grateful for this grant from Greater Cincinnati Foundation and United Way of Greater Cincinnati’s COVID-19 Regional Response Fund,” said Melissa Kennedy, Executive Director of IRSF. “This support will allow us to provide Rett-specific lifelines of hope to families who are now homebound, bridging the gap between what resources are available and what resources are needed.”