USH Ambassador for Maine

Julie Welch

A smiling woman wears a hat and sunglasses. She is standing with her white cane. Water is behind her.
Julie Welch, USH Ambassador for Maine

Hi, my name is Julie and I'm your USH Ambassador for the state of Maine. I was born and pretty much raised in the state of Maine, where I still live with my husband.

My Story:

I was born with mild to moderate hearing loss. The doctors didn't have any explanation as to the cause of my hearing loss. At the age of two, I was fitted with behind-the-ear hearing aids. Around the age of 10, I started to experience difficulty seeing at night and started walking into things. My parents brought me to the eye doctor, but the doctor didn't have a diagnosis. He suggested that maybe I was just clumsy.

After graduating from high school, I got a job as a certified nursing assistant. At that time, I was driving but only during the day. As I got older, my family noticed that my vision continued to get worse. In 2000, I went to a different eye doctor. He was older and more experienced than the previous doctor, and he knew right away what was going on. He noticed the RP, mentioned "Usher syndrome" and referred me to a specialist in Boston. Later that year, my diagnosis of Usher syndrome was confirmed. By 2008, my vision reached the point where the eye doctor told me it was no longer safe to drive.

As I got older, I noticed that my hearing and vision kept getting worse. In 2023, after my yearly audiology check-up, I was referred to see if I was a candidate for a cochlear implant. I was, and in 2024 I was implanted in both ears! This procedure has helped me tremendously to be able to hear things in my environment and to be able to understand conversations!

With my experiences and challenges living with Usher syndrome. I would love to help others going through similar experiences. 

Feel free to contact me at ambassador.me2@usher-syndrome.org

Resources for Maine

  • 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.

  • DRM provides Information and Referral, Individual Advocacy, Legal Representation, Education and Training, Assistance with Self-Advocacy. DRM welcomes calls from people with disabilities inquiring about their legal rights. However, DRM does not advise landlords, schools, businesses, or providers of accommodations or services.

  • 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 Iris Network has a MISSION of helping people with vision impairment or blindness attain independence and community integration.

  • Resource Guide: DEAFBLIND & DUAL-SENSORY IMPAIRED

  • Division for the Blind and Visually Impaired
    207-623-7948
    COMPREHENSIVE SERVICES FOR VISUALLY IMPAIRED AND BLIND INDIVIDUALS OF ALL AGES
    If you have a vision problem that prevents you from carrying out the activities of daily living, getting an education or a job, there is help. The Division for the Blind and Visually Impaired can provide many services to persons with severe visual impairments.

  • Maine Relay is a free statewide service that connects voice telephone users with individuals who are deaf, hard of hearing, late-deafened or have a speech disability. The service allows consumers to use specialized equipment (i.e. captioned telephone, TTY, VCO or HCO) to communicate with standard voice telephone users through specially trained relay operators (RO).

    Stay connected with family, co-workers, and friends! It has never been easier with Maine Relay. Relay services use specially trained relay operators to connect calls between TTY or VCO users and standard telephone users. Maine Relay Services are available 24 hours a day, every day, 365 days a year. All calls are confidential. No records of any conversations are maintained.

  • Provides adaptive technology services for those who are blind or visually impaired; offers training in the use of various speech recognition packages, as well as other methods of computer input for those who require alternatives to the standard keyboard and mouse.

    Serves preschoolers to senior citizens and provides the products and training that enable an individual to harness the information a computer can provide. Provides consultation to colleges and universities, private employers, government organizations, and non-profits.

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

  • 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.