USH Ambassador for Montana - Catelyn Allen

Catelyn stands at the water's edge in front of a tall rusty structure in the water. Her son stands in front of her. She holds her son's hands out. They are both smiling.

Hi - I'm Catelyn Allen, the USH Ambassador for Montana. I have been an ambassador since 2023. 
I am a Fleet Analyst for our power company, where I buy and sell trucks, trailers, and POEs - Power over Ethernet switches used in transportation systems. 

I decided to become an USH ambassador when my son, Benjamin, was diagnosed with Usher syndrome type 2C. When we got our diagnosis, it was like a bomb went off, and the doctors were no help. I had to navigate this whole thing alone. We live in such a rural state that the doctors didn’t know anything about Usher. They just said, "Your son is deaf (at age 2) and is going to start going blind when he hits puberty. Good Luck!" Our world was shattered, and I never want another family to feel that way. I want to help other families walk this path, and build a community. 

We know of only 6 people in the state of Montana (including my son) who have been diagnosed with Usher. We are available to connect with other families, and love that we might be able to ease the pain for others and share our experiences. I love learning more about this syndrome, and meeting some amazing people who are DeafBlind+ but don't have Usher.

Please contact me at: ambassador.mt@usher-syndrome.org

Resources for Montana

  • 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.

  • 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.

  • Enhances the educational services provided to children and youth, birth through age 21 years, with combined vision and hearing impairments. The Project provides statewide technical assistance and training to support parents, service providers, and agencies in meeting the educational needs of children and youth who are deaf-blind.

  • A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.