USH Ambassador for the District of Columbia

Meet Naomi

Asian woman with black and white dress stands smiling with hands on hips in front of a sparkling green background.
Naomi Shoger, USH Ambassador for the District of Columbia

My name is Naomi Shoger, and I am the new USH Ambassador for the District of Columbia, where I advocate, raise awareness, and work to build the Usher community.

My Story
I was born deaf in China. When I was six years old, I was adopted by an American couple and spent the rest of my childhood in Maryland. Shortly after my adoption, I received cochlear implant surgery (Nucleus). I had no language at that time, and learning English proved to be very difficult for me. I had to learn how to hear, speak, and understand English. I learned a little bit of American Sign Language but never utilized it, as I rarely met Deaf people. Verbal communication is my primary means of connecting with others. Thanks to my mom’s persistence in helping me excel in speaking and understanding English, I am now fluent in this challenging language!

My parents began to notice something was "off" when I struggled to see well in the dark. They had no idea that I had a genetic disease, and neither did I. When I was eleven or twelve, I was officially diagnosed with Usher syndrome after undergoing genetic testing. I have USH Type 3A, despite my symptoms seeming to align more with Type 1. My parents’ hearts sank when they learned that I would never be able to drive or see well in the dark and that I would go blind one day. Despite the diagnosis, I was determined to lead as "normal" a life as possible. I was a very active child, involved in church ministries, participating in sports, and traveling around the world with my family. I made sure that Usher syndrome would never impede my ability to pursue my dreams.

I was homeschooled from kindergarten through high school. I graduated from a community college with an AA in Business Administration and later earned a Bachelor of Science degree from the prestigious Robert H. Smith School of Business at the University of Maryland – College Park. Currently, I work in the DC/NOVA area.

I would love to connect with you if you are in the DC metro area - even to meet for coffee! Please feel free to reach out. I hope you can join me in building a network in DC where people with Usher syndrome can connect and create a community!

You can contact me at: ambassador.dc@usher-syndrome.org

Resources for the District of Columbia

  • The USH Trust is the largest international contact database of individuals with Usher syndrome. Created and maintained by the Usher Syndrome Coalition, it is our most powerful tool to connect and inform individuals living with Usher worldwide. The USH Trust allows us to get to know and serve the community better, and to do what we do best: identify, build, support, and connect the community, both within the Usher community and with the research community. We do this via email, telephone, videophone, social media, webinars, local social events, our USH Connections Conference, and the many resources on our website. Come, join us!

  • Individuals with Usher syndrome who are passionate about research have a new data collection platform to join. The Usher Syndrome Data Collection Platform, or USH DCP, is hosted by RARE-X, a nonprofit dedicated to accelerating research. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, date of birth, address, etc.) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.

  • Connections Beyond Sight and Sound is a partnership between the Maryland State Department of Education and the University of Maryland, College Park. This project supports Maryland and DC children and young adults with deafblindness in their homes, schools, and communities by providing consultation, training, special programs, resources, and technical assistance to children and their families and providers.

  • DC Relay provides a 24-hour communication service that connects people who are deaf, hard of hearing, deaf-blind, or have difficulty speaking and use specialized telephone equipment to people who use standard telephones.

  • Provides free telecommunication evaluation, equipment, and training to children and adults with significant vision and hearing loss who qualify. iCanConnect is a national program authorized under the National Deaf-Blind Equipment Distribution Program.

  • Program and services for youth and adults with combined vision and hearing loss.

  • A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.