USH Ambassador for South Dakota

Ryan Groeneweg

Ryan Groeneweg is the Director of Community Education at the University of South Dakota (USD) Center for Disabilities at the Sanford School of Medicine in Sioux Falls, SD. He is the Director of the USD Board Certified Behavior Analyst (BCBA) Certificate Program & and the Master in Health Science, with a Specialization in ABA program. His past positions include Director for Autism Community and Transition (ACT) services at the Village Northwest Unlimited (VNU), in Sheldon, IA, Interim Clinical Director for the North Dakota Autism Center in Fargo, ND, and School Psychologist and BCBA consultant working to expand behavioral support to rural school districts and families with limited access to quality ABA services throughout South Dakota, Minnesota, and Iowa.

If you were to meet Ryan, you would also learn that he is a devoted husband of 31 years, with a growing family that includes four children, three who are married, with three grandchildren, and one who is in her final year of college. Ryan also would tell you that he has a diagnosis of Usher’s 2A, which has impacted both his vision and hearing. He just recently started a journey to become an advocate for himself and others with disabilities and looks forward to sharing and helping others where he can. 

You may contact Ryan at: ambassador.sd@usher-syndrome.org

Resources for South 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.

  • Ryan Groeneweg was interviewed at the University of South Dakota Medical School about navigating life with disabilities. Ryan’s disability could not be seen or heard. For much of his life, he did not willingly share his diagnosis of Usher syndrome, which has impacted his vision and hearing since birth, with others. Now Ryan is at a point in his life where he speaks up about what he long tried to hide. He writes, “ As I age, my vision has gotten worse, to where I am legally blind. This means I am no longer able to hide my disability, leading me to learn to share more about it. It’s not easy, but with the help of my family, I am learning to share, advocate, and accept.”
    A devoted husband of 32 years with a growing family that includes four children and three delightful grandchildren, Ryan Groeneweg, Ed.S., BCBA is the Director of Community Education at the USD Center for Disabilities Sanford School of Medicine. He’s active on numerous boards and committees, currently chairing two, that advocate on behalf of individuals with disabilities. Text transcript available under the video