USH Ambassadors for California - Katrina and Jake

Katrina Stanley

Image description: Young white woman with short black hair and turquoise highlights, speaks into camera. 

Transcript: Hi, I'm Katrina one of the ambassadors for the Usher Syndrome Coalition.  I currently live in California and I help with finding resources and connections there. I personally have Usher type 2a and was diagnosed about 10 years ago. I finished my master's recently and am currently working/looking for employment while working with Usher Syndrome Coalition. And I wanted to say, "Hang in there, and everything will work out," and that you have found the right place to be in the Usher Syndrome Coalition. It's a huge family and everybody here helps everybody. So thank you and hope to help and hear from you soon! 

Contact Katrina at: ambassador.ca@usher-syndrome.org

Jake Romano

Jake Romano is our newest USH Ambassador for CA. You may contact him at: ambassador.ca2@usher-syndrome.org

Resources for California

  • 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.

  • CDBS serves individuals from birth through age 21 who have combined hearing and vision loss, with or without additional disabilities.

  • Program and service referral

  • 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.