Jun 28, 2022
Rachel Chaikof was one week old when her mother, Melissa, suspected that something was wrong: she didn’t startle at the sound of a slamming car door. Rachel was diagnosed with Usher Syndrome, a genetic condition which causes either inherent or progressive deafness.
But being deaf was not an absolute: as a child, Rachel became one of the first children to receive a Cochlear Implant by way of an FDA trial. Because of medical innovation, Rachel could now experience the world for how it was meant to be experienced.
But later, Rachel also began to lose her sight. At the age of 19, Rachel was diagnosed with Usher Type 1, more specifically categorized by progressive blindness in addition to loss of hearing. This time, there was no medical innovation currently available, and Melissa, an experienced advocate in the network of nonprofits dedicated to hearing loss, devoted herself to a new goal: finding a cure for Usher’s Type 1.
The Chaikof's have seen all that medical innovation is capable of. That’s why Melissa and her husband started the Usher 1F Collaborative, a nonprofit devoted to funding such research. And while their daughter remains optimistic about all that she is capable of, her loss of sight has compromised what she loves most about the world: seeing its beauty in color and having the freedom to navigate on her own.
While Rachel is thankful for all of the modern innovations that have allowed people with disabilities to navigate society, she also believes that sometimes, that can distract from the commitment to finding a cure for genetic conditions like Usher Syndrome. Instead of pushing for our environments to adapt to us, how can we push for new research that will instead allow us to access the world for all that it is–beautiful, colorful, and full of possibilities?
Melissa Chaikof is the Board Chair for Usher 1F Collaborative, Inc. Interested in contributing? Find them here: https://www.usher1f.org/