September 21, 2024 is Usher Syndrome Awareness Day.
Every year, the third Saturday in September is celebrated by the Usher Syndrome Coalition as our global "Usher Syndrome Awareness Day". The third Saturday in September falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light - a powerful metaphor for the threat of Usher syndrome.
To help increase awareness about Usher Syndrome, the Coalition has shared the presentation recordings from the USH2024 USH Connections Conference in its YouTube Channel: https://bit.ly/USH2024playlist
Here is a list of the presentation videos posted:
- Welcome Address
- Keynote Speaker: Defying the Odds
- Usher 101: Realities, Resources, and Research Location
- Atypical Usher Syndrome and Usher Syndrome type 4: Do they really exist?
- Progress and Promise of Usher Syndrome Society Sponsored Research
- NAC Attack Clinical Trial for RP
- A First-In-Class Revolutionary Platform: jCell® Retinal Progenitor Cells (RPC) Restoring Vision
- in Patients with Blinding Diseases
- Clinical Trials: Options, Decisions, and Expectations
- More than meets the eye: Current and future applications of stem cell technology in
- Usher syndrome
- USH Research Panel Q&A
- Low Vision Rehabilitation and Resources
- Updates on Hearing Assistive Technology From a DeafBlind Audiologist
- Genetic Testing in Usher Syndrome
- USH DCP: Community-Driven Data Science
- Addressing the Mental Health Needs of the Usher Community: Step 1 and Beyond
- Clinical Trials: Perspective from Participants
- Living with Usher Syndrome - Panel Discussion
Please share this post with others in India who have Usher syndrome. For more information, contact info.india@usher-syndrome.org