Number 62: Families Rally Amid Cuts to Rare-Diseases Research

The developmentally disabled community is at a precipice. Trump’s cuts to special education, Medicare, and scientific research have trickled down to impact the most vulnerable. This reporting project blends the personal with the political. The reporter’s own child was number 62 in the world diagnosed with a rare genetic condition called Nicolaides-Baraitser syndrome (NCBRS). Her “special” school in California, her summer “crip” camps, her art program—spaces where this intellectually disabled teen thrives—are threatened.

Globally, it’s a similar story: research grants disappearing, loss of support services, severe shortage of trained professionals. Families being asked if they want to institutionalize their young adult. “It feels like we’re back in the early 1900s,” a British father said, describing the options presented to him when his son, number seven in the world with NCBRS, turned 18.

This project uses one rare syndrome to illuminate challenges for people with developmental disabilities. The 330 NCBRS youth are medical mysteries scattered around the globe. No matter their country, from those with decent welfare-safety nets, to those with none, these kids are falling through social, educational, and medical cracks.

The stories in this project also spotlight creative solutions. From a profile of the Cypriot doctor who “discovered” this rare syndrome, to the families who organized themselves to push doctors, scientists, and institutions to better serve their disabled children. This project is told with the reporter’s daughter, introducing audiences to an intellectually disabled narrator.