Just for Young Adults was curated by former intern Jessica Chaikof.
Are you a student with Usher syndrome? Would you like to share your experiences? Contact us here: firstname.lastname@example.org
Dealing with Usher syndrome is not easy for anyone but especially when you are a young adult. As young adults, we look forward to being more independent; selecting a college; or planning on a career. It is challenging to make these choices because we do not know others with Usher syndrome, who have gone through these situations previously. We have decided to create this section on the website with hopes of connecting young adults with others, who have Usher syndrome as well. The goal of this page is to provide advice on college, starting your career, self-advocacy, and a better understanding of the ADA relating to Usher syndrome. We encourage you to use this page as a resource and to write to us with suggestions and ideas.
The Usher Syndrome Coalition estimates that there are more than 7,000 children with Usher syndrome in the United States. Yet in 2015, the state deaf-blind projects reported that roughly 300 children with Usher syndrome were served. Where are these students being educated? And are their educational needs being adequately met?
Nancy O'Donnell, Director of the USH Trust Registry provided an overview of the mission of the organization, the types of support they provide to families of children with Usher syndrome, and shared information about their main product, a registry known as the USH Trust.