USH Ambassador for North Dakota - Amber

Family photo of Briggs, dad Ross, Bella, mom Amber, Braya and Brecka, standing by a fence. Farmland surrounds them

Thyskeson family - Briggs, dad Ross, Bella, mom Amber, Braya, and Brecka

Meet Amber Thykeson, our new USH Ambassador for North Dakota. 

I am honored to step into the role of USH Ambassador for North Dakota, a volunteer opportunity that is deeply personal to me. My journey into advocacy began with my two incredible daughters, Brecka (11) and Bella (7), who were both born with Usher syndrome Type 1B. 

Our family lives on a rural farm in Hope, North Dakota, where life is busy, grounded, and full of meaning. Alongside my daughters are my husband, Ross, who is a farmer, our son, Briggs (9), and another daughter, Braya (3), who are not affected by Usher syndrome. As a family, we navigate both the unique challenges and the beautiful moments that come with raising children with different experiences and needs.

Despite the challenges that come with Usher syndrome, Brecka and Bella live full, very active lives. They are involved in sports, enjoy time with friends, stay engaged in school, and love making memories with everything they do. Brecka is a sports-loving fanatic! Whether it is on a court or field, she enjoys putting her best effort forward for every game and practice. Bella is a girly-girl through and through. She loves hair, make-up, clothes, shopping, and anything that has some sparkle! The girls have two different personalities, yet they have this bond that keeps them close together. They remind me daily that a diagnosis does not define a child’s personality or potential—it simply adds a unique layer to their story.

Becoming an USH Ambassador is my way of turning our family’s experience into something meaningful for others. My goal is to connect with families across North Dakota who are impacted by Usher syndrome in any capacity—whether newly diagnosed, navigating school and communication needs, or simply looking for a sense of community. I hope to help build a stronger, more connected Usher community within our state.

It is also incredibly meaningful to me to advocate for family members of individuals living with Usher syndrome. This journey doesn’t just impact the person diagnosed—it affects siblings, parents, extended family, educators, and friends in unique and important ways. I want to help create understanding, offer support, and ensure that all affected feel seen and supported as they navigate this path together.

I am passionate about sharing resources, offering support, and raising awareness so that no family feels alone. Whether it’s connecting families to information, encouraging early intervention, or simply being a listening ear, I want to be a source of support and hope.

I look forward to learning from and growing alongside the incredible families and individuals in the Usher community.

You may contact me at: ambassador.nd@usher-syndrome.org

Resources for North Dakota

  • The Usher Syndrome Coalition's "USH Trust" is the largest international contact database of children and adults with Usher syndrome, and our most powerful tool to connect, inform, and support individuals within the Usher community. Those who join the USH Trust are also the first to learn about the latest research opportunities. Information in the USH Trust is confidential and is not shared outside of the Coalition.

  • 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.

  • 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.

  • 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.