The Usher Syndrome Coalition is proud to present the "first ever" series of educational videos about Usher syndrome in American Sign Language (ASL). These videos, also available on our YouTube channel, will provide you with answers to the most commonly asked questions about Usher syndrome. Video transcripts are in the Comments section under the video on YouTube. If you have questions you'd like us to answer, let us know at info@usher-syndrome.org. 

Check out the Usher Syndrome Series in ASL playlist below, or go to the Usher Syndrome Coalition YouTube channel.

FAQs about Usher Syndrome

  1. Karmen Trzupek, Certified Genetic Counselor (CGC), provides a basic overview of genetics and Usher syndrome.

  2. Jennifer B. Phillips, Ph.D. provides a basic overview of gene therapy and Usher syndrome.

  3. Dr. Shannon Boye summarizes efforts to develop a dual AAV vector-based gene therapy for Myosin7a Usher syndrome (USH1B). The drawbacks of USH1B mouse models and a rationale for testing these vectors in a more clinically relevant species are discussed.

  4. Kevin Richmond kicks off this series on Usher syndrome in ASL by summarizing the history of the Usher Syndrome Coalition and our goal.

  5. Kevin provides a brief description of Usher syndrome, the most common genetic cause of combined deafness and blindness.

  6. This video provides an overview of the vision loss related to Usher syndrome: retinitis pigmentosa.

  7. A brief description of the Usher syndrome type 1 in ASL with English captions.

  8. A brief description of the Usher syndrome type 2 in ASL with English captions.

  9. This video provides an overview of Usher type 3 in ASL with English captions.

  10. Just because a person is deaf and has poor vision doesn't mean that they have Usher syndrome. How can you find out for sure if you have Usher syndrome?

  11. How is Usher syndrome inherited? Kevin explains the basics of how the Usher gene is passed down in families.

  12. Kevin explains the USH Trust registry and why it's so important to the Usher community. Individuals may register at www,usher-registry.org

  13. For 10 days, Kevin has been teaching us about Usher syndrome. Now, he shares his own story as a person living with Usher syndrome.

  14. Kevin explains the difference between these 2 commonly used words in the research world.

  15. What is the process of research, from theory to treatment?

  16. We usually think of viruses as making us sick. Kevin explains how researchers are testing the use of viruses to deliver healthy genes to the eye.

  17. Kevin shares his personal opinion about how his identity might be influenced by treatments or a cure. Fascinating food for thought!

  18. Researchers have used stem cells from donors to treat diseases. Now, they can create these cells from your own tissue, reducing the risk of rejection. Kevin explains how this process is being tested to repair retinal cells.

  19. Kevin talks about the K-12 years and offers some ideas about supports for students with Usher syndrome.

  20. College provides an opportunity for young adults to learn about the Vocational Rehabilitation system and how to advocate themselves.

  21. Do adults with Usher syndrome work (of course) and what types of jobs do they have? Kevin talks about life in the real world.

  22. Kevin has talked about life with Usher syndrome at various milestone ages. But what does the Usher community look like as a whole?

  23. The diversity of the Usher community applies to communication too. Kevin describes some of the many ways that individuals with Usher syndrome communicate. What's your preference?

  24. Kevin provides an overview of the NDBEDP, or National Deaf-Blind Equipment Distribution Program, also known as iCanConnect.

  25. Kevin shares some fun facts about Usher syndrome.

  26. Kevin attended his first USH Connections Conference in 2017. If not for that conference, these videos would probably not exist. Read about his experience at the conference.

  27. A brief summary of resources available through the Usher Syndrome Coalition.

  28. Kevin takes a look at the past 25 days of ASL videos. What an amazing journey!