Jon Schultz

Diagnosed with Usher syndrome type 3A shortly after graduating from college, I initially coped by avoiding the reality of a progressive disease that causes combined vision and hearing loss. My response was denial, I avoided dark and noisy environments and did my best to hide my symptoms.

My true “re-diagnosis” occurred when I chose to face the diagnosis alongside my wife, Lizzie, who has been an unwavering partner in helping me navigate the unknown, anticipate obstacles, and provide unconditional love and support.

Now, as the father of two young children, the progression of Usher syndrome shapes our daily family life. While this journey has grounded me and given me a deep perspective on what matters most, living with a disease that is constantly changing presents ongoing challenges, especially as it relates to navigating relationships both new and old.

My hope is that, through continued research, we will one day have treatments, and ultimately a cure.

Watch the video below to hear more of Jon’s story and perspective on living with Usher syndrome.