Are you a student with Usher syndrome? Would you like to share your experiences about self-advocacy? Contact us here:

Self-advocacy is one of the most fundamental skills anyone can learn especially at a young age. By learning self-advocacy, you are taking charge of your own actions and needs to ensure success for college, career, or any future endeavors. Self-advocacy can range from taking initiative to not only introduce ideas but to implement them. Examples can include creating a group to advocate for students with disabilities; fundraising for Usher syndrome research; or explaining to people what your disability is and your needs.  

Experiences from Young Adults in the Usher Community

  • Check out Ethan Morrobel's article, "An Uncomfortable Life: Getting Comfortable with Being Uncomfortable" in the April edition of Exceptional Parent magazine, page 38.Ethan is a college student with Usher syndrome.

  • My Experience and the Importance of Self-Advocacy, written by Ava Bullis, a high school student with Usher syndrome.

  • "Instead, I am the person who, upon realization, does not see Usher as a threat. I am the kind of person who takes ​action​, the person who ​reaches out,​ ​who is ​motivated​, who is resilient,​ who knows that there is ​some solution​ out there ​regardless​ of how awful the situation seems." Read more about Brendan Creemer's experience.