The USHbrothers, Ethan (22) and Gavin (20) are originally from Toronto Canada, and currently live in New Jersey. These two proud Canadian boys were born profoundly deaf and diagnosed with Usher syndrome type 1B in 2009 when they were seven and five years old. They met this challenge head-on by being early advocates for themselves, spreading awareness, and raising money for Usher Syndrome causes. Through their school years they demonstrated their leadership and public speaking skills giving presentations and speeches at regional and national conferences, workshops, schools/universities, teacher trainings, parent to parent meetings, fundraisers, retreats, and Deafblind family activities.
Ethan, in 2020, and Gavin, in 2022, graduated from high school with high honors and as members of the National Honor Society. Throughout their high school years they served as counselors for their hometowns’ Educational Foundation organization’s Annual Leadership Conference and were members of the Civil Air Patrol. They were varsity swimmers and were on their cross-country, baseball, volleyball, and golf high school teams. They competed across the country in para-athletic events, won national para-swimming championships in 2019, and were named All American para-swimmers.
Ethan and Gavin have received multiple recognitions for their academic, leadership, and athletic endeavors. They were each recipients of the Cochlear Americas Graeme Clark Scholarship when they graduated from high school and in 2023 both were named Cochlear National Inspirers for their advocacy efforts. Ethan received his high school’s County Scholar Athlete Award and was recognized with the Youth Merit Award from the NJ Commission for the Blind and Visually Impaired. Gavin was one of the recipients of the first ever RIT Microsoft Disability Leader Scholars Program and the AG Bell National Scholarship. Among the many academic scholarships they received in high school, both were awarded the George Brian Memorial Scholarship for overcoming adversity.
Gavin and Ethan were part of the first USHthis Camp in 2019 and are both USHmentors for the USHthis camps in the US and UK. They have shared their story with the Usher Syndrome Society’s awareness initiative, Sense Stories, designed to educate the world about Usher syndrome through video story telling. They are part of the SPAN Parent Advocacy’s Deaf Mentor Program and shared their self-advocacy journey with the organization’s Amplify Advocacy video series. Recently, in 2024, they lead the USHangouts activities, an opportunity for youth with Usher syndrome to make face-to-face connections with their peers at the 2024 USH Connections Conference
Ethan had an article published in Exceptional Parent magazine in April 204 titled, ‘An Uncomfortable Life: Getting Comfortable with Being Uncomfortable.’ He says having Usher syndrome has shaped who he is today – he learned that embracing discomfort can lead to incredible things. He emphasizes that, “I may not have had the typical path, but there’s no one ‘right’ way to do life. It’s MY journey, and that’s what matters.”
Gavin’ article titled, ‘Speaking Up,’ was published in the July 2024 issue of Exceptional Parent magazine. He says that his life has been about challenging the idea that people with disabilities have limitations. He believes it is more about finding our unique strengths and how we use them to excel that make us who we are. He proclaims that, “this is my life and I’m living it to the fullest, on my terms.”
Currently, the brothers are both students at the Rochester Institute of Technology in Rochester, New York. Ethan is studying mechanical engineering with a focus on Aerospace. Gavin is pursuing a combined Bachelor’s/Master’s degree in Finance. They are both members of the Pi Kappa Phi Fraternity through which they are involved in hands-on, service-based leadership training including volunteer work and fund-raising to help empower people living with disabilities. They also participate in a variety of extracurricular activities including hockey, volleyball, and swimming.