USH Ambassador for Hawaii - Bryson Amaral

Stocky bearded man with glasses stands in front of the Library for the Blind in Kapahulu. His right hand is in the shaka handshape, symbolizing "hello," "goodbye," and "Hang ten."

No way! There I was sitting in an examination room on the 4th floor of Tripler Army Medical Center, waiting on the results of a genetic test that was taken a week prior, on 26 Feb 2020. After a few agonizing minutes of playing “what if” in my head, a tall Caucasian man wearing the duty uniform of fatigues with the rank of Colonel O-6 introduces himself and proceeds to fumble his way through telling me about the rare condition called Usher syndrome, how I have the markers identified for type 2A; how I will go blind within 10 years. Through the fog of his words and my shock of disbelief, he asked if I had children - asked if I was related to my wife because the condition is genetically inherited, told me that my 2 sons are carriers of this unique expression, and that their children are at greater risk of acquiring the same condition as I.

All I heard really was that I was going blind on top of my lifelong struggle with hearing loss - a death sentence. I mean I DROVE to the appointment and now a medical professional so crudely told me my eyes will only get worse, and that I would be deaf and blind like Helen Keller and that I would be medically chaptered out of the US Army (the only life I’ve ever known) once the paperwork for the Med board was initiated. I was numb. Too numb to even begin to think about anything except the fact I was going blind. To make it worse, this was March 5, 2020 - a week or so before the governor of Hawaii implemented an emergency stay-at-home order due to the COVID-19 pandemic. I was losing my identity as a soldier, and my vision. Along with that, I felt like losing my life as well. I BECAME LOST.

Fast forward 5 years and a whole lot of change; a searing of my own consciousness, and the weight of navigating this world; I got an email about “80 to 20” from the Usher Syndrome Coalition. 80 days until September 20th and Usher Syndrome Awareness Day. Just then, I decided to do something about it because, in the 6 years since being officially diagnosed with Usher syndrome, I have only met one other person with Usher in Hawaii. I need to change this. That’s why I followed that email from the Coalition and got the Chief Executive of the State of Hawaii to sign a proclamation stating September 20th 2025 as "Usher Syndrome Awareness Day." Then, as a step forward in my journey to accept my own situation, I wanted to finally learn more about what Usher syndrome actually is and become a “Beacon of Hope” as an USH Ambassador to others who may find themselves with a similar diagnosis. It is my hope to find my Ohana of deaf/blind people here in Hawaii to share information and resources to life - a more full and meaningful existence - but most importantly to let my people know you are loved and not alone.

Come find me, help me find our people to bring them into the Hui.

You can email me at: ambassador.hi@usher-syndrome.org

Resources for Hawaii

  • 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 from 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 service referral

  • 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.