USH Ambassadors for Pennsylvania - Lisa and Kadie

Lisa Lopatofsky

I’m Lisa Lopatofsky, a proud mom of four beautiful girls, two of whom have Usher syndrome type 1B. My journey as a mom has fueled my passion for advocating for the Usher syndrome community and helping raise awareness and support for families like mine.
 
I’ve been involved in Usher syndrome advocacy for several years, and in 2020, I was honored to become the USH Ambassador for Pennsylvania. Taking on this role felt like a natural next step in my advocacy journey and gave me another opportunity to connect with families, share our experiences, and help make a difference in the lives of those affected by Usher syndrome.
Outside of my advocacy work, I serve as a treasurer for our local municipal government, sit on the Pennsylvania Deaf-Blind Advisory Committee (PaDBAC) to the Bureau of Special Education, and volunteer as both a 4-H Club Leader and a Girl Scout Troop Leader. My family, my community, and my commitment to helping others are all important parts of who I am, and I’m grateful for the opportunities I’ve had to make a positive impact in each of these areas.


Contact me: ambassador.pa@usher-syndrome.org

Kadie Trauger

Head shot of a woman with chin length brown hair smiling into camera.

Hello! My name is Kadie Trauger. I was born and raised in PA and mainstreamed with a sign language interpreter. I am deaf and use my cochlear implants to communicate in spoken English and American Sign Language. 

I was diagnosed with Usher syndrome Type 1B at age 16. I graduated from Rochester Institute of Technology with a Business degree.
During my college years, I was involved in a summer internship with the DeafBlind Service Center in Seattle, WA, where I gained more
experience with working with DeafBlind community.  Now, I work part-time for Step Up Services, providing Support Service Providers (SSP) for DeafBlind individuals throughout the state of Pennsylvania.  

I communicate using spoken English with my cochlear implant (CI) on, as well as American Sign Language (ASL). In my free time, I enjoy baking sourdough bread, running, and spending time with my husband and two children.

I would love to connect with individuals living with Usher syndrome, or anyone who knows of someone with Usher. There are no silly questions, so please feel free to ask me anything! I look forward to meeting you!

You can contact Kadie at: ambassador.pa2@usher-syndrome.org

Resources for Pennsylvania

  • 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.

  • Provides support for individuals with deafblindness and their families through a family-driven network.

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

  • Provides services to students, parents, educational systems, and agencies including Support Service Providers, ASL courses, educational services, IEP consultation, and more.