USH Ambassador for Alaska

Sarah Bailey

A sketch of a woman looking up at the stars

Hi! My name is Sarah Bailey and I have Usher syndrome Type 2A. I am the Alaska USH Ambassador. I live here in Southwest Alaska. I have 3 kids. I am looking forward to connecting with you and just know that we are in this together! 

 

Contact Sarah: ambassador.ak@usher-syndrome.org

Learn more about me by checking out my Sense Story on YouTube! https://youtu.be/pIpH0zgOlWA

My Rare Artist interview: https://www.youtube.com/watch?v=zEfnw32-FNE 

Resources for Alaska

  • 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.

  • 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.

  • Offers support and services to Deaf and Hard of Hearing individuals in a manner that is free of cultural or language barriers.

  • 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.