Vermont

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. This will allow us to continue to do what we do best: Identify the community, build the community, connect the Usher community with each other and with the research community, and support the community via email, telephone, webinars, our USH Connections Conference, and the many resources on our website. 

Individuals with Usher syndrome who are passionate about research have a new data collection platform to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information proactively available to researchers. By generating the most comprehensive Usher Syndrome Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries.

Providing services for individuals birth through 21 years with deafblindness, including free collaborative technical assistance to families, education personnel, and service providers through training, and information dissemination.

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.

In November of 2022 Vancro was awarded a Pilot Grant for up to 4 years to provide Support Service Providers (SSPs) to any Vermonter with a dual sensory hearing and vision loss which impacts their ability to do daily activities like read mail, drive, go food shopping, run errands, or attend family functions. This group of people are often called "DeafBlind" although they have a wide range of vision and hearing loss and may use Tactile American Sign Language or use assistive technology like hearing aids. They may have low vision or tunnel vision.

The Grant allows for trained SSP’s to act as a guide, communicate visual and environmental information, and facilitate communication – to be a conduit that allows a DeafBlind person to have greater independence and decision making. SSP’s are allowed to drive DeafBlind program participants and are allowed to be in their homes.
Currently there is no restriction to how many times a DeafBlind person can request an SSP.

Long recognized by his Deaf peers as a sought-after storyteller, Rene expanded his repertoire in recent years to chronicle DeafBlind life, "learning through Laughter", as René The Unstoppable. He has taught numerous workshops on being DeafBlind, having Usher syndrome, and using Haptics. He is a consultant for the DeafBlind Equipment Distribution Program for Vermont. He also is a weekly contributor to the Deaf Digest.