USH Ambassador for Massachusetts, Stephen James

Hello! My name is Stephen. I have Usher syndrome type 2. I was diagnosed with RP at the age of 17. I wear hearing aids and I am currently learning ASL and want to learn Protactile Sign eventually. I currently live in Massachusetts, born and raised. I work at Perkins School for the Blind, in addition to working at the Carroll Center for the Blind.  I aim to continue working at Perkins as a teacher’s assistant while going back to school to be a teacher of the visually impaired (TVI). Living with Usher has been, and will always be, a rather interesting and frustrating experience. It is my goal to be helpful to others with Usher, for we do not have to be alone.  Being the only person in my entire family with Usher, it’s been lonely and isolating. I enjoy reading, playing video and board games, going for hikes, and I absolutely love dogs.

Please reach out if ever you need any help, information, or just to have someone to vent to. Living with RP is a roller coaster of emotions that not many can ride, but there is no reason for any of us to ride alone. 

You may contact Stephen at:

White man smiling, wearing hat (Perkins School for the Blind). Stephen is holding a white cane.
Stephen James, USH Ambassador, Massachusetts

Resources for Massachusetts

  • 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.

  • EI provides services and supports to babies and young children with developmental delays and disabilities and their families. There services may include speech therapy, physical therapy, and other types of services based on the needs of the child and family. Infants who fail the newborn hearing screening are eligible for these services, which can have a significant impact on a child’s ability to learn new skills and increase success in school and life.

  • 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.

  • The DeafBlind Community Access Network (DBCAN) program works to empower DeafBlind people in Massachusetts to increase and sustain their independence in the community. They matche DeafBlind adults with trained providers who assist with accomplishing everyday tasks, such as: reading mail and other printed materials, exercising and participating in fitness programs, using the MBTA and other modes of transportation, doing personal errands (bank, hair salon, shopping, and more), and attending medical appointments. Additionally, this support ensures our DeafBlind community members can also engage in cultural, educational, recreational, and religious events.

  • 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.

  • ESTABLISHED IN 1936. Has been serving those with vision impairment for over eight decades. Located in Newton, Massachusetts. Serves all ages and all stages of vision loss.

  • McLean offers high-quality mental health treatment for individuals of all ages experiencing a wide array of symptoms and diagnoses

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

  • Respite program for Deaf, Hard of Hearing, and DeafBlind residents of MA, over 18 years of age.