My family, from left: Conner, Hunter, Lane, Dalton, Todd, Cole.
Why I care about Usher Syndrome
When our first son, Conner, was diagnosed with Usher Syndrome, my husband and I were devastated. Conner was born deaf and received a cochlear implant at a young age, but as he prepared to start kindergarten, we found out he had Usher. We were determined to find out all we could about Usher and we wanted to turn our fears and uncertainty into something positive. We started the Hear See Hope Foundation in 2004, hoping that with a sustained commitment, we would see a cure for Usher syndrome in our children’s lifetime. With the birth of our fourth and youngest son Dalton in April of 2008, we found a renewed sense of urgency to find a cure.
Throughout this journey, we have met many helpful and knowledgeable researchers and doctors who are doing all they can to find a cure, formed partnerships with families and organizations, and tried to teach our sons to overcome obstacles. We have raised money, funded research, and learned so much. As my children grew, working with schools on IEPs and advocating for them became a focus for me. Helping other parents create IEPs for their children and knowing I wanted to influence and empower parents, I chose to pursue doctoral studies in special education, specializing in deafblindness and IEPs. I see it as one more way for me to raise awareness and make a difference for families.
As Conner is now in his first year in the Honors Program in college, I wish for not only his success but also for the success of other children with Usher. I work tirelessly to do what I can to make that happen.
What is Usher Syndrome?
Usher Syndrome is the leading cause of deafblindness in the United States. It is a combination of Retinitis Pigmentosa (RP) and some level of hearing loss. There are about 10-15,000 people with Usher syndrome in the United States today, including my sons Conner and Dalton. Our family’s experience inspired my husband Todd, and I to start the Hear See Hope foundation to raise funds and awareness about Usher Syndrome. It also inspired by research and my decision to earn my Ph.D. in Special Education, focusing on hearing and visual impairments.
How is Usher Syndrome diagnosed?
With visual function tests, visual fields, electroretinogram (ERG), retinal examination, hearing tests, and balance tests.
How is Usher Syndrome treated?
There is currently no medical treatment for Usher syndrome. Research and genetic testing are currently being conducted. Cochlear implants have been found to be very effective in patients with severe or profound hearing loss.