USH Ambassador for North Carolina
My name is Rebecca (Becca) Brown and I live in Durham, NC. I’m excited to join the Usher Syndrome Coalition as the North Carolina Ambassador in their mission to reach and engage as many people affected by Usher syndrome in the state.
A goal of the Ambassador Program is to bring the local community together and build that local connection among those with Usher syndrome in North Carolina. I was born with moderate to severe hearing loss and have been wearing hearing aids bilaterally since I was 3 years old. I began experiencing difficulties seeing in dim lighting in my mid-to-late 20s. It wasn’t until I moved to North Carolina from NY when I went in for a routine eye exam and she saw that I had signs of retinitis pigmentosa. I was officially diagnosed with USH2A in 2020 at the age of 34. I am still processing this diagnosis and learning ways to cope and adapt. As a mother of one little boy (and a baby on the way!) I have found great support, comfort, and solace in the “Awesome Moms with USH” community on Facebook.
I am completing my last semester in graduate school at University of North Carolina at Chapel Hill to become a Licensed Mental Health Counselor. Prior to returning to graduate school, my career was focused on serving those with intellectual and developmental disabilities. I was a group home manager, independent living manager, and a case manager. I also have a Master’s degree in Disability Studies from University at Buffalo in New York State.
I am looking forward to connecting with individuals with Usher syndrome and their families. I hope to bring together the local community in an effort to have close-to-home support and help raise awareness in the state of North Carolina. Please feel free to contact me with any questions or concerns. I look forward to the opportunity to get to know each of you and build a connection with you.
Resources in North Carolina
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.
Program and services for youth and adults with combined vision and hearing loss.
iCanConnect provides people with combined and significant vision and hearing loss who qualify with free telecommunication equipment and training. Each state has their own program. Funding for iCanConnect is provided through the National Deaf-Blind Equipment Distribution Program, NDBEDP.
A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.
This project provides information, support, resources, and technical assistance to programs serving children who are deaf-blind, and their families in North Carolina.