USH Ambassadors for New Jersey - Tara Lotito

Headshot of white woman with long dark brown hair and brown eyes, smiling at camera.

I’m 48 years old and have worn hearing aids since I was four. I was diagnosed with Usher syndrome type 2 at age 18, during my college years. I communicate orally and have recently begun learning American Sign Language. I’m also the proud mom of a 27 year-old son.

For nearly 20 years, I worked as a tax, trusts, and estates attorney. Over time, as my vision loss progressed, continuing my career became increasingly difficult, and I ultimately retired. For many years, I avoided thinking about my changing vision and focused on living my life, dealing with challenges as they arose rather than preparing for what might come next.

Over the past three years, I’ve traveled, learned new skills, and worked to build my independence and navigate the world more safely. Along the way, I’ve discovered incredible resources and met wonderful people whose guidance and support have made a meaningful difference in my life.

Having experienced Usher syndrome through so many stages of life - from college and career decisions to parenting, retirement, transportation, and independent living - I understand how different our questions and needs can be at each stage.

As the USH Ambassador for New Jersey, I hope to bring together our NJ Usher community, offer friendship and understanding, and help individuals and families find the resources, support, and paths forward that work for them. We don’t have to navigate this journey alone.

If you’re part of the New Jersey Usher community, I’d love to hear from you - whether you have questions, are looking for resources, or simply want to connect and get to know one another.

Contact me at: ambassador.nj@usher-syndrome.org

Resources for New Jersey

  • 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.

  • The mission of Ava’s Voice is to empower youth with Usher syndrome and to educate families and school communities. The host an annual camp for youth with Usher syndrome, and other cool events.

  • NJCDB is a federally funded organization who provides community support for the unique educational needs of students who are deaf-blind. We have an effective menu of professional development activities including anchored technical assistance, topical training, information and resources, as well as an intensive intervenor training program.

  • 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.

  • Information & Referral Services for NJ Residents

  • A supportive space for individuals and families in New Jersey affected by Usher syndrome to share experiences, resources, and build meaningful connections. Whether you're seeking community, sharing your journey, or simply looking to connect with others who understand, this group is here for you.

  • Offers affordable housing in New Jersey designed for those who are Deaf, Hard of Hearing, DeafBlind & Late-Deafened

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

  • Resources regarding deaf and deafblind children regarding a wide range of considerations, from early language and mode of communication decisions to educational programming through transition to adult life.