Virginia

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.

A Family Specialist for the deaf/HH community and a Family Specialist for the blind/vi and deafblind community provide 1:1 emotional and system navigational support and guidance. This includes Early Intervention, IEP, Transition, and so much more. Additionally we run several monthly parent support and information meetings. Regional meetings, Deaf/HH Parent meetings, Blind/VI Parent meetings and Deafblind Parent meetings.

Serves as the Pre-ETS (Pre-Employment Transition Services) & Vocational Rehabilitation (VR) for Deaf/Hard of Hearing, and collaborates with DBVI for deafblind. They have VR counselors in each region that are specifically for the deaf/hard-of-hearing community.

An education coordinator can provide guidance for Early Intervention (EI) through graduation or age 22. They also serve as the Pre-ETS & Vocational Rehabilitation Center for Blind/Visually Impaired and Deafblind. Pre-ETS stands for Pre-Employment Transition Services, which are an array of early, career-focused support services designed for high school and post-secondary students with disabilities (generally ages 14 to 22) to help them transition smoothly from school to further education, training, or competitive integrated employment.

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.

We are parents with blind or visually impaired children and a division of the the National Federation of the Blind Virginia (NFBV). We hold bi-monthly virtual meetings and a parent's program at the annual state convention

Providing technical assistance to families and educational teams who serve learners with combined hearing and vision loss in Virginia (birth to 21 years old). Check out their Facebook group at https://www.facebook.com/VirginiaDeafblindProject

The Parent Educational Advocacy Training Center builds positive futures for Virginia’s children by working collaboratively with families, schools, and communities in order to improve opportunities for excellence in education and success in school and community life. Our special focus is children with disabilities.

Strives to promote public awareness and understanding of the communication needs and personal challenges of persons who are deafblind. It is estimated that over 16,000 people in Virginia have a combined loss of vision and hearing.

The Virginia Department for the Deaf and Hard of Hearing (VDDHH) promotes accessible communication so that persons who are Deaf and Hard of Hearing may fully participate in programs, services and opportunities throughout the Commonwealth.

The Infant & Toddler Connection of Virginia provides early intervention supports and services to infants and toddlers from birth through age two who are not developing as expected. This includes children who are deaf/hard of hearing, with our without vision loss.

The goal of the SSP Pilot Project is to increase the availability of trained SSPs in Virginia, and to increase access to SSP services for consumers who are deafblind in Virginia. This grant project began in January 2023 and will end in December 2024, unless other funding is found. It is a collaboration between the Virginia Department for the Deaf and Hard of Hearing, the Department for the Blind and Vision Impaired, and Reynolds Community College. The grant is provided by the Virginia Board for People with Disabilities. A Support Service Provider, or SSP, is a specially trained individual who provides access to the community for people who are deafblind. This allows the person who is deafblind to make decisions for themselves based on the visual, environmental, and social information communicated by the SSP.

In 2022, the state of Virginia passed a House resolution recognizing Usher Syndrome Awareness Day on 3rd Saturday of September, every year. This coincides with the Usher Syndrome Coalition's international Usher Syndrome Awareness Day, established in 2015.