Check out this recent interview with USH Ambassador for Mexico, Diana Velarde. Well done, Diana! yotambien.mx/actualidad/ace… You can use Google Translate to change the article to your preferred language. Enjoy! #UsherSyndrome #USHAmbassador

Did you know that the new #disabilityPride flag highlights the diversity within the disability community? Each color of the flag represents various types of disabilities: respectability.org/2022/07/disabi…

Our USH Local Social in Boston has been rescheduled for Saturday, September 16th, opening up this gathering to more people in the community in honor of #UsherSyndromeAwarenessDay Register by August 15 and save! usher-syndrome.org/ushlocalsocial…

Today, in honor of the 33rd anniversary of the passing of the Americans with Disability Act (ADA), PBS is airing a special documentary short, "American Masters: Protactile: A Language of Touch." youtube.com/watch?v=6zCzsm…

RESEARCH UPDATE: Was this announcement in your inbox? If not, join the USH Trust, so you are the first to know ProQR Therapeutics ://www.proqr.com/press-releases/proqr-therapeutics-and-laboratoires-thea-announce-agreement-for-thea-to-acquire-proqrs-sepofarsen-and-ultevursen-ophthalmic-assets

Ava Bullis, a 17-year-old with #UsherSyndrome, recalls the early days of Covid-19 in her article “Covid-19 and Digital Equity for Deaf-Blind Learners: My Experience and the Importance of Self-Advocacy.” nationaldb.org/national-initi…

Did you get our monthly Grounded in Science newsletter today? Check your inboxes! This month we talked about the concept of #AnticipatoryGrief and how it can be seen in our #UsherSyndrome community. Have you experienced this?

Head to the link in our bio and get started today. Thank you so much, friends! #UsherSyndrome #DeafBlind #RareDisease ushersyndrome.rare-x.org

In August, 8 new individuals have enrolled in the 'Usher Syndrome Data Collection Program' (USH DCP) so far. Can you help us get to 50 new signups by September 1st? The more participation, the more valuable this data collection effort becomes for research. ushersyndrome.rare-x.org

As we settle into the new year, we’re excited to announce we have joined Bluesky, the new social media platform! We’ve noticed many researchers and scientists actively engaging there, and we look forward to connecting with you in this new space! bsky.app/profile/usherc…