USH Ambassador for Michigan

Sarah Turner

Sarah Turner lives in Michigan with her daughters. Sarah was diagnosed with USH2A at the age of 38 and is still adjusting to the diagnosis, learning about Usher syndrome, and what it means for her. She works full-time in Marketing, and when she's not working she loves running, photography, baking, and reading. In addition to her role as an ambassador, Sarah works with the Coalition as a volunteer on the Marketing team. 

Contact Sarah at: ambassador.mi@usher-syndrome.org

Resources for Michigan

  • 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 program to join. The Usher Syndrome Data Collection Program, or USH DCP, is powered by RARE-X, a program of Global Genes a nonprofit dedicated to accelerating research in the rare disease community. 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, email address) 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.

  • DB Central provides technical assistance, information, and training to address the early intervention, special education, related services, and transitional services needs of children with DeafBlindness and enhance state capacity to improve services and outcomes for children and their families.

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

  • 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.

  • The Michigan Bureau of Services for Blind Persons (BSBP) provides DeafBlind services that support vocational rehabilitation, transition services for high school students, and independent living consultations to customers who are legally blind and have moderate to profound hearing loss. BSBP provides DeafBlind services statewide to all BSBP Program eligible participants.

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