USH Ambassador for Connecticut

Mikaela Zito

I am a mom of three kids (two boys and a girl). My son, Jack, was diagnosed with Usher syndrome Type 2C when he was 6 months old. As with most families, it came as a shock to us. We were unfamiliar with the condition and how it would impact his daily life now and in the future. My research immediately led me to the Usher Syndrome Coalition. They have been a fantastic resource for information since, as well as connecting me with other parents in similar situations and helping me feel like part of a community. I am passionate about the research being conducted in the IRD space and looking for ways to support a cure, as well as generating awareness regarding Usher syndrome. I am looking forward to connecting with new members of the USH community in this role!

Contact me at ambassador.ct@usher-syndrome.org 

Resources for Connecticut

  • 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.

  • Assists state and local education agencies in developing the capacity to serve children and youth who are deafblind. NEC provides training and technical assistance, disseminates information regarding evidenced-based practices, provides parent training and networking activities, and collaborates with local and state agencies serving children who are deafblind or at-risk.

  • 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.

  • 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 is a private, global COMMUNITY committed to helping you build a thriving mindset and connect with tools and resources to succeed in school, business, and life without sight.