USH Ambassador for Alabama
Image description: White woman with short brown hair and glasses speaks into the camera. She is wearing a black V-neck shirt with a black and white pattern on the collar. Behind her is a coral-colored wall with pictures. The fins of a ceiling fan are above her, to her right.
Transcript: Hello! My name is Kathy Thompson. My name sign is "K" on the wrist like "computer." I live in Alabama and have been here since 2007. I am a member of the Usher Syndrome Coalition community and have been since 2012. I've also been a board member at the Coalition since 2018. I discovered in 2012 that I had retinitis pigmentosa during a routine eye exam. Later that same year, I found out I had Usher syndrome type 2a. I have talked with several organizations throughout Alabama about Usher syndrome and retinitis pigmentosa as a member of the Usher syndrome community. My message includes the following: The future is bright regardless of whether you are a member with Usher syndrome or know someone who has Usher syndrome. Continue to learn and share when you can. The strength of our community comes from each and every member within our community. Thank you and have a great day!
My goal is to build the community of individuals in Alabama who have or know someone who has Usher syndrome so we can network, share stories about our individual journeys, share information/resources, and provide support to each other.
First, let me share my story with you so you can get to know me. I was diagnosed with Retinitis Pigmentosa (RP) in 2012 during a routine eye exam. Imagine my surprise when the eye doctor told me he believed I had RP. My purpose for that eye exam was to get a new pair of glasses, not discover that I had a life-changing eye disease! Later that same year, I traveled to the National Institutes of History (NIH) in Bethesda, Maryland where the doctors confirmed I had Usher syndrome type 2A. My official genetic diagnosis came in 2016 since my genetic testing confirmed that I had Usher syndrome type 2A. Like most, I am the only one in my family to have hearing loss and/or RP.
Since I diagnosed with RP as an adult, I was unaware of assistive technology and other resources to help navigate life with Usher syndrome. Once I discovered the Coalition, I became educated about the disease and discovered strategies to help deal with the challenges of both hearing loss and RP. I also met several folks who were willing to share their journey with me and I learned even more about how to survive Usher syndrome.
I am hoping that you will be interested in joining me as I work to develop our Alabama network.
Please reach out via email if you would like to connect! I look forward to connecting!
Contact Kathy at: firstname.lastname@example.org
Resources for Alabama
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.
Builds capacity of state and local agencies, parents and professionals to improve services and outcomes for children and young adults who are deaf-blind and their families by providing innovative technical assistance, information and training.
Provides comprehensive education and rehabilitation services at no cost, in all 67 counties of Alabama, to almost 25,000 deaf, blind and multidisabled infants, children, adults and seniors annually.
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.