USH Ambassador for Wisconsin - Shari

Shari Atchison

My name is Shari Atchison and I’m excited to be the WI ambassador for the Usher Syndrome Coalition! I have Usher syndrome type 2A. I am a licensed massage therapist and own my own business. I work with people who have stress, tension, and/or need pain relief.

Usher syndrome is an insidious disorder that progressively chips away at the corners of our vision, slowly affecting night vision, peripheral vision, depth perception, and color discrimination. Sometimes, the hearing loss is steady or drops. Leading a stress-free life as much as possible helps maintain a better quality of life for those affected by Usher syndrome and/or life stressors. Living with Usher syndrome is frustrating and challenging. It helps when we know we are not alone and can reach out and find resources to help our journey with Usher syndrome. We are NOT alone! I’m happy to assist along that path and lessen the stress! 

You can also read my blog from the early days of living with Usher syndrome:


Resources for Wisconsin

  • 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.

  • Improving services and support for children who are deafblind and their families resulting in increased participation in family, community and employment settings.

  • 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.