USH Ambassadors for Minnesota - Trevor and Monica
Trevor Turner
Meet Trevor Turner, USH Ambassador for MN
Image: Male in his early 30s, short blond hair, blue and green striped shirt, stands on an apartment terrace, a cityscape behind him.
Transcript of video: Hello Usher syndrome community at the Usher Syndrome Coalition conference. My name is Trevor Turner. I am one of the Usher syndrome ambassadors for the state of Minnesota. I have type 2A Usher syndrome myself, and I am an international development professional. I have 10 years of non-profit experience and lived and traveled around the world. Here in Minnesota, our Usher syndrome community is small, but we're identifying more and more people, and we're growing. Our biggest potential here is being able to connect with all the medical companies and medical professionals here, like the hearing and vision industries in MN.
Contact Trevor - ambassador.mn@usher-syndrome.org
Hi, my name is Monica Smith. I live in Minneapolis, MN. I am the parent of a 24-year old daughter who has Usher syndrome.
I became an USH Ambassador in early 2025. I was inspired to become an ambassador because when our daughter was diagnosed with Ush 2A at the age of 15, the first thing we did was reach out to the Usher Syndrome Coalition. We were desperate for information about this rare disease and to make connections with others who understand the lived experience of people with Usher syndrome. I hope to offer help, support and resources to individuals and families who are at various stages of an Usher syndrome diagnosis so they know they are not alone and that they have a community around them.
A bit about me personally - I’m retired! The last 13 years of my working life involved community engagement work in Minneapolis. I spent the first year of retirement raising a puppy for Leader Dogs for the Blind. Our daughter has a wonderful guide dog, and my husband and I wanted to support Leader Dogs by volunteering to raise one of their puppies. I enjoy pickleball, yoga, reading, and hiking in the mountains when I get the chance to travel away from the prairies of Minnesota.
I look forward to connecting! You can contact me at: ambassador.mn2@usher-syndrome.org
Resources in Minnesota
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This free and confidential registry, maintained by the Usher Syndrome Coalition, is the only registry exclusively for individuals of every age with any type of Usher syndrome, worldwide. By registering, you become part of a growing global community. The registry is our most powerful tool to connect the community, learn about the community, and support research.
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Serves families and educators of children and youth who have combined hearing and vision loss, with or without additional disabilities, from birth to age 21.
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Program and services for youth and adults with combined vision and hearing loss.
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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.
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A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.
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Maya is one of our USH Ambassadors for MN. This is her first published piece with Wordgathering. She enjoys writing science fiction, short stories, and about the daily lived experience of being disabled.
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The Minnesota Commission of the Deaf, DeafBlind, and Hard of Hearing featured USH Ambassador Trevor Turner in their #CanDoAnything campaign.
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The Minnesota Council on Disability encourages Minnesotans in need to contact Starkey Hearing Technologies for assistance in acquiring no-cost hearing aids.
From Starkey Hearing Technologies:
All of us at Starkey understand the difficulties that individuals with hearing loss face. We want to help! Starkey Cares is a corporate social responsibility program dedicated to giving back to the local community. For those struggling to afford hearing aids, Starkey Cares can help acquire state-of-the-art hearing aids at no cost. If you or someone you know is interested in participating, please email Liz Sweet, Starkey Director of Corporate Social Responsibility, at starkeycares@starkey.com or call (800) 328-8602 to learn additional details about the program.Participants must be able to meet the minimum qualifications outlined below:
Documented hearing loss
Demonstrated financial need
Minnesota resident with the ability to attend an in-person fitting
