USH Ambassador for Kentucky

Katie Fromholt

L-R: Katie stands with her son, daughter, and husband outside a house.
USH Ambassador Katie and her family

Katie Fromholt serves as the Kentucky Usher Syndrome Ambassador, using her personal and professional experiences to advocate for individuals with Usher syndrome across the state. In her role as an Outreach Specialist with the Kentucky School for the Deaf, Katie offers statewide consultation, assessments, and support for students who are Deaf, hard of hearing, and DeafBlind. Prior to her current role, she worked for 13 years teaching and working in early intervention at Heuser Hearing & Language Academy.


Katie holds a bachelor’s degree in Deaf and Hard of Hearing Education and a master’s degree in Interdisciplinary Early Childhood Education from Eastern Kentucky University. In 2020, she earned National Board Certification as an Exceptional Needs Specialist with a focus on Deaf Education.

Katie’s journey with Usher syndrome is deeply personal. Her son, Brody, was diagnosed with Usher syndrome Type 1b as an infant and received bilateral cochlear implants at 15 months old. Katie has worked to ensure that Brody thrives in both his academic and personal life, supporting his self-advocacy and fostering a love of sports, travel, and creativity. Together with her family, Katie promotes awareness and support for the Usher syndrome community, ensuring that others facing similar challenges have access to the resources and understanding they need.

Contact Katie: ambassador.ky@usher-syndrome.org

Resources in Kentucky

  • 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 are invited to join the Usher Syndrome Data Collection Program, or USH DCP, powered by RARE-X. Health information entered into this secure platform will become part of a global database of de-identified information available to researchers worldwide. As the DCP grows, more researchers will become aware of Usher syndrome, leading to the development of clinical trials and treatments for the vision loss, hearing loss, and balance issues associated with Usher syndrome.

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

  • iCanConnect provides people with combined and significant vision and hearing loss who qualify with free telecommunication equipment and training. Each state has their own program. Funding for iCanConnect is provided through the National Deaf-Blind Equipment Distribution Program, NDBEDP.

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

  • This project provides information, support, resources, and technical assistance to programs serving children who are deaf-blind, and their families in Kentucky.