USH Ambassadors for Missouri

Linda Hager, Susan Thies, and Ammanda Hager

Meet Linda

My name is Linda Hager and I reside in Independence, Missouri.  I am so privileged to be an Ambassador for the Usher Syndrome Coalition and it is truly a joy to share this with my dear friend, Susan Thies. We met on the USC email group. 

Susan and I hope to be able to connect with the Usher syndrome population of Missouri. We have many resources we are eager to share. We know that connecting with others who share this syndrome becomes a friendship full of joy and understanding.

At the age of 8, I remember playing tag with the neighborhood children, it was getting dark and I could not see a thing. We had to go in and I told my brother I couldn’t see in the dark out there, he replied, “I can’t either, it’s normal.” I was in the public schools and had no problems with hearing nor did I wear glasses. In high school, I had a job after school and weekends & saved my money. I was going to travel to England! I lived in England for a year and attended University. I would have been a senior in high school.  I came home the following May and tested out for an Associate’s degree, in June I graduated from High School. The only problem - I could not see at night! I worked 8 hours a day using my business skills learned at University and went to college at night to finish my degree. 

I married at the age of 23 and within a year was living in Germany. At the age of 24, I ran a stop sign and was pulled over by Military Police.  They told me I needed to get my eyes checked. I got an appointment at 97th General Hospital in Frankfurt and drove myself there.  The Ophthalmologist told me, “You have stars in your eyes!”  What does that mean?  You have retinitis pigmentosis. I continued to work and drive, although I did have to start wearing glasses. In 1977 we returned stateside. I then learned that my brother also had been diagnosed with RP. We went to see the ophthalmologist who tested our eyes as children. At that time he told us that he diagnosed the disease when we were 12 and 13 but our mother did not want us told.

For years, we were angry about not being told. However, I know I would have missed out on scuba diving, skydiving, traveling to Europe on my own, getting married, having children, and also working all those years in jobs I really enjoyed.

I had to stop driving about the age of 50, my peripheral vision was very tunneled.  Not a problem, we were enjoying being grandparents and traveling all over to visit friends and see new things. About the age of 64, I noticed my hearing was not perfect. In 2017 I had a visit with my retinal specialist, and he wanted me to take a DNA test, a clinical trial was going to be started for people with RPE65 gene. I took the test and found I had the USH2A gene. So now, I have moderate to severe loss in one ear and moderate loss in the other. I had a very hard time with this. I finally went to my computer, googled "Usher syndrome," and found the pages that restored hope to me. I was not the only one with this syndrome!

As Ambassadors, Susan and I hope to become acquainted with all the people and families in Missouri who are dealing with Usher syndrome. We would really love to hear from you if you have any questions or just need someone to talk with who understands. We would really like to hear your story!

Meet Susan

My name is Susan Thies, and I live in Lone Jack, MO.  I am a volunteer ambassador for the Usher Syndrome Coalition.  The Coalition provides local resources to people affected by Usher syndrome and accelerates research for the scientific community.  

I was born with moderate to severe hearing loss.   Since I was non-speaking, I attended Central Institute for the Deaf in St. Louis a half day after attending a public school kindergarten class in the morning. I was taught how to hear with one analog hearing aid and to speak clearly.  I continued my education in a mainstream public school. My mother had to beg them to allow me to attend since this was before laws were passed to allow children with special needs into public schools.  I wore one analog the majority of my life.  With my mother's strong encouragement and tutoring in lip reading, I did fairly well in school. Looking back, I know I missed a lot of what went on and struggled to keep up with the hearing world.

As I got older, I learned to advocate more for myself in school by sitting near the teacher, borrowing notes, and using my lip-reading skills. I managed to complete college with a Master's Degree in Elementary and Special Education.  I taught at a State School for the Severely Handicapped for several years.  I spent the next 24 years teaching regular 4th grade.  I worked with many resource teachers allowing access to my classroom for all types of students with disabilities.  

In my late 30s my eye doctor began to notice spots in the back of eyes.  By the time I was in my early 40s, it became apparent to me that my peripheral vision had some blind spots, and I had trouble seeing in dim light.  My peripheral vision was slowly being replaced by a snowy static area.  After tripping and falling multiple times I finally received a diagnosis of Usher syndrome from my ophthalmologist at the age of 50. A genetic test confirmed that I have Usher Type 2C. Luckily, I was already close to retirement from teaching.  I have since given up driving and purchased 2 digital hearing aids which helped my hearing tremendously!  

I joined the Usher Syndrome Coalition private email group and met Linda Hager who asked me to be a Missouri ambassador along with her.  We have become fast and dear friends. I am so grateful to have met someone who understands the struggles of having a dual sensory loss.  It is my sincere wish to bring together a local community of individuals and their families with Usher syndrome.  Please contact us if you would like to learn more.  

You may contact Linda and me at: ambassador.mo@usher-syndrome.org

Resources for Missouri

  • 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 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.

  • Providing technical assistance to families and educational teams who serve learners with combined hearing and vision loss in Missouri
    (birth to 21 years old).

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

  • SASISTL or SASI is a social networking group for people who have both Deafness and Blindness and can meet others like themselves and feel like they "fit in." We are very casual, comfortable, and fun group. We encourage family members to come, too. We welcome volunteers who would like to help by assisting as "eyes" and "ears" as needed.

    Monthly meetings are held on the 3rd Saturday, from 9:30 am-12:30pm, at The Society for the Blind and Visually Impaired, 8770 Manchester Rd., Brentwood, MO 63144