USH Ambassador for the District of Columbia

Meet Naomi

Asian woman with long black hair, black blazer, and white collared shirt smiling.
Naomi Shoger, USH Ambassador for the District of Columbia
Naomi - Asian woman with black hair, smiles while standing in front of the famous Taj Mahal. She is wearing a dark jacket with a blue collared shirt underneath. Behind her, the famous white marble monument, Taj Mahal, its minarets, and a reflecting pool

Hello! My name is Naomi Shoger, and I am the USH Ambassador for the District of Columbia, representing the DC metro area (DMV), where I have been living for the past two years. In this role, I advocate, raise awareness, and work to build and strengthen the Usher syndrome community.

I have Usher syndrome Type 3A, the rarest genetic form of Usher syndrome. I was officially diagnosed at twelve years old. I am bilaterally implanted with Cochlear Nucleus implants and still have some useful central vision, which helps me navigate the city and the places I go. I primarily rely on spoken and listening language, as I did not grow up using American Sign Language. Growing up with Usher syndrome was not easy, but it taught me many important lessons. It helped shape my resilience, resourcefulness, ambition, and determination. Despite the challenges I face every day, I continue to live life to the fullest and make the most of what I can do now. Running has recently become a passion of mine and a form of therapy. I also love traveling and experiencing new places while I still can. Exploring the world and staying active help me stay positive and motivated.

If you are in the DC metro area, I would love to connect! My goal is to build a strong network where individuals with Usher syndrome can connect, support one another, and grow a thriving community together.

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.