SCOTCH PLAINS/FANWOOD, NJ --The Usher Syndrome Coalition -- an organization of individuals and families working to build the global community and speed the search for a cure -- five years ago declared the third Saturday in September as global “Usher Syndrome Awareness Day."
The day falls near the autumnal equinox, marking the start of days that contain more darkness than light — a powerful metaphor for the threat of Usher Syndrome, a rare, inherited disease and the most common genetic cause of combined deafness and blindness that affects at least 25,000 Americans, and over 400,000 people worldwide. Most children with Usher syndrome are born with moderate to profound hearing loss. Vision loss is progressive and usually occurs at a young age or through adolescence.
Brothers Ethan Morrobel, a freshman at Rochester Institute of Technology, and Gavin Morrobel, a junior at Scotch Plains-Fanwood High School, are national spokespersons for Ava's Voice, an organization dedicated to empowering youth with Usher syndrome. In 2018, they accepted the Usher Syndrome Awareness Day proclamation from Mayor Al Smith and the Township Council.
Despite the challenges faced by living with Usher Syndrome, the brothers lead fulfilling lives. Ethan and Gavin spend much of their free time speaking at schools, universities, and events to spread awareness and educate communities across the nation. Additionally, during his senior year of high school, Ethan, a swimmer, was named as UCIAC's Male Athlete of the Year. Both boys had record-breaking performances at the U.S. Paralympics Swim Meet in December 2019.
Because of the limited public awareness, those affected with Usher syndrome may suffer with depression, anxiety, isolation and loss of independence.The COVID-19 pandemic has profoundly impacted the lives of the tens of thousands of Americans who are deaf-blind due to Usher Syndrome. The impact of social distancing on a community that relies on touch has been devastating.
Leading up to Usher Syndrome Awareness Day 2020, the Morrobel brothers will be raising awareness about the disease and sharing resources to support deaf-blind students. There is much disparity amongst the states whether students are in person, hybrid or remote, but the philosophy stays the same.There are many accommodations to be considered when interfacing technology with the general education curriculum.
For more information about Usher syndrome visit www.usher-syndrome.org.
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