USH Ambassador for Iowa

Laurie McBride

Photo of Laurie, white woman with short brown hair and glasses.

Laurie is the DeafBlind Employment Specialist (DBES) for the Helen Keller National Center (HKNC) in Iowa and Minnesota. Job development services provided include online job searching skills, support in online job applications, and job interviews, including solving transportation challenges and ensuring reasonable accommodations are provided by employers. Also, as a DBES, she can provide information and resources to family members, employers, and local vocational rehabilitation counselors.

Originally from Ontario, Canada, Laurie worked in Iowa as a graphic designer for almost 20 years. Since 2015, Laurie has worked as a contract trainer with the Helen Keller National Center for the National DeafBlind Equipment Distribution Program (or iCanConnect), providing consumers training in telecommunications equipment while attending college and university to obtain her bachelor’s degree in human service.

Laurie has learned to adapt to different workplace environments with her hearing loss and now with combined hearing and vision loss due to Usher syndrome type 2C. Her experience is a helpful tool in her DBES position, which allows her to share examples of successful strategies and tasks that she has accomplished. Her personal experience as a DeafBlind person shows consumers and potential employers that people with vision and hearing loss can live AND WORK in their community. Self-advocacy has been an essential tool in finding her job and adapting her career path. Using these personal assets to assist other DeafBlind consumers in finding and retaining employment will result in the right fit for both employee and employer. Laurie has been involved with the Midwest Transition Institute 2019-2023 as a Mentor and Mentor Coordinator, in 2020-present as a Self-Advocacy presenter, and in 2022- present as part of the National USH Career Mentor Pilot Program committee and Lead Mentor. She understands the importance of the Mentor curriculum needs to be explicitly created for DeafBlind individuals on a national level to be diverse and inclusive within the DeafBlind community.

Laurie has been a USH Ambassador since 2020 in the state of Iowa. In her role at HKNC, she has connected individuals and families with the USH community and has conducted some virtual presentations on Usher syndrome. Mentoring youth, adults, and families is why I became a USH Ambassador. Knowing we are not the only ones with Usher syndrome positively impacts the individual with the diagnosis and the family members.

She is working on her master’s in organizational leadership, which will support her role with the various mentor projects she participates in and self-advocacy presentations. In her spare time, she is training in Taekwondo, working her way up to a black belt and beyond.

Contact Laurie at: ambassador.ia@usher-syndrome.org 

Resources for Iowa

  • 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.

  • Serves children and young adults ages birth through twenty-one who are suspected of having both a hearing AND a vision loss or difficulty in processing auditory and visual information. We are dedicated to building the knowledge and skills of all stakeholders involved in the education or parenting of these learners. We believe in using a collaborative, multi-faceted, approach to achieve positive, fulfilling futures for children and youth with deafblindness.

  • This video shows interviews of families of children who are deafblind, as well as 2 adults with Usher syndrome, living in Iowa.

    Meet Rodenna Frank, Usher type 1, at 8:40 into the video
    Meet Laurie McBride, Usher type 2C, at 24:12 into the video

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