We've launched a blog! As part of our efforts to bring greater awareness to Usher syndrome, we’re proud to introduce a new space for storytelling. This blog aims to to elevate the voices and lived experiences of individuals living with Usher syndrome, as well as the voices of friends, family members, and researchers who are all part of this unique, challenging, and emotional journey. Check out these powerful stories here: https://www.ushersyndromesociety.org/news-events/ & if YOU would like to contribute to this blog, send us a message! A huge shout out to Pamela Aasen for helping us with this wonderful initiative 💙 #Blog #Storytelling #UsherSyndrome #USH #RareDisease #DeafBlind #Community #Nonprofit #Website (fb)

Research Update: JCyte Trial! The Usher Syndrome Society has proudly supported jCyte's work and closely followed their progress over the years. We are thrilled to share that jCyte is now recruiting adult patients with any form of retinitis pigmentosa (RP), regardless of genetic cause, for their JC02-88 clinical trial (NCT06912633) in Southern California. This marks a significant milestone in their mission to bring hope and potential treatment options to those living with RP, many of whom currently have limited or no available therapies. Learn more and see if you or someone you know may qualify on the JC02-88 Study page: https://www.jcyte.com/JC02-88-study/ #Research #Trial #UsherSyndrome #RareDisease #USH #Treatments #Science #NonProfit (fb)