Rare disease foundation helps families during COVID-19

From virtual learning to working from home, the COVID-19 crisis has created unprecedented challenges for everyone, but extremely vulnerable populations have faced even more risks.

At the onset of the pandemic, the International Rett Syndrome Foundation (IRSF) — which supports families who have children with Rett syndrome, a rare, severe neurological disorder — immediately began working with several researchers to find ways to support housebound families during the crisis.

Rett syndrome occurs in 1 out of 10,000 female births and more rarely in males. It varies in severity but most children who have the disease lose their ability to speak, walk and use their hands. They often experience seizures, scoliosis, breathing abnormalities, and gastrointestinal issues.

“COVID-19 has had a profound impact on this vulnerable population,” says Melissa Kennedy, IRSF’s executive director. “Our families are under quarantine, and many are without their care teams and essential speech and physical therapy services. Parents are suddenly the sole caregiver for their child and feel unprepared and overwhelmed.”

With the help of a $30,000 grant from the Greater Cincinnati Foundation and the United Way of Greater Cincinnati’s COVID-19 Regional Response Fund, the foundation has continued its mission of educating and empowering families. The funding came at a time when the IRSF was incurring substantial financial loss due to the pandemic-related cancellation of fundraising events.

The foundation serves thousands of families across the nation and internationally. There are between 8,000 and 12,000 individuals with Rett syndrome in the U.S. Around 125 who are in the Greater Cincinnati area.

“Our families were very concerned about the health of their loved ones with Rett syndrome,” Kennedy notes. “They wanted to know how to keep their loved ones safe. They needed a one-stop place for information and resources.”

The grant has helped IRSF develop more than 30 hours of expert-led online tutorials and curriculum that families caring for a child or adult with Rett syndrome can use at home, which include focus areas like communication and physical therapy. For example, in partnership with a leading Rett syndrome physical therapist in Israel, the foundation created tutorials to introduce simple stretches and exercises that families could use with their child, tween or adult, regardless of their level of mobility. The materials have been viewed more than 30,000 times from individuals around the world.

“We are pleased that the Greater Cincinnati Foundation and the United Way of Greater Cincinnati have seen the benefits the International Rett Syndrome Foundation has been able to bring to its families during this pandemic,” Gordon Rich, the organization’s founder. “We are serving a record number of individuals through telehealth and outreach programs. The support from the Regional Response Fund will allow us to continue serving families in their time of need.”

For more information about IRSF, visit www.rettsyndrome.org.

Continued COVID-19 coverage has been supported by a grant from the Facebook Journalism Project, a program run in partnership with the Lenfest Institute for Journalism and Local Media Association.