USH2024 Connections Conference Presentations

USH Connections Conference

July 19-20, 2024 | USH2024, a Hybrid Event in Rochester, NY and Online

In July 2024, the Usher Syndrome Coalition held its hybrid USH Connections Conference, hosted in partnership with the National Technical Institute for the Deaf. This was our largest conference ever, uniting the global Usher syndrome community. We welcomed 482 total participants from 20 countries - that includes 396 in-person attendees and 86 virtual attendees. We also worked with 92(!) Access Providers - interpreters, SSPs/CoNavigators, captioners, etc - in total, this gathering touched 574 lives!

At USH2024, we successfully navigated the highest number of requests for tactile and protactile interpreters in the history of this event, ensuring access for all.

The Usher Syndrome Coalition's USH Connections Conference is an incredible opportunity to learn the latest on developing treatments from leading USH researchers while connecting with hundreds of individuals and families living with Usher syndrome and professionals serving the deafblind community.

Our USH2024 conference began with a keynote from Dr. Jasmine Simmons, a deafBlind Black audiologist, children's book author, and advocate for inclusivity in healthcare and employment. Jasmine's keynote set the stage for General Session presentations that covered various aspects of Usher syndrome research, resources and support.

Check out the below presentations offered live and pre-recorded to review the research and resource updates provided at USH2024.

The USH2024 conference featured a diverse range of presentations and workshops focused on the latest research, clinical updates, and resources for the Usher syndrome community.

Research:

An introductory overview of Usher syndrome was covered by presentations like Usher 101: Realities, Resources, and Research and
Presentations covered Progress and Promise of Usher Syndrome Society Sponsored Research, showcasing advancements across all Usher syndrome types.
The NAC Attack Trial for RP was highlighted, emphasizing the ongoing search for effective treatments for Retinitis Pigmentosa.
A First-In-Class Revolutionary Platform: jCell® Retinal Progenitor Cells (RPC) Restoring Vision in Patients with Blinding Diseases provided insights into jCyte's innovative approach to vision restoration.
Updates on stem cell technology were discussed in More than Meets the Eye: Current and Future Applications of Stem Cell Technology in Usher Syndrome.
The conference featured an in-depth USH Research Panel Q&A, addressing various research efforts and developments.

Resources:

Updates on Hearing Assistive Technology From a DeafBlind Audiologist provided insights into the latest innovations in hearing technology.
A session on Low Vision Rehabilitation and Resources explored tools and strategies for those with vision impairment.
Genetic Testing in Usher Syndrome covered the importance and implications of genetic diagnostics.
USH DCP: Community-Driven Data Science introduced data-driven approaches to understanding and addressing Usher syndrome.
Mental health topics were addressed in Addressing the Mental Health Needs of the Usher Community: Step 1 and Beyond, along with an outline of future plans for expanding mental health support for those with USH.

Workshops:

Concurrent workshops empowered in-person attendees, including Connecting with Our Sense of TOUCH, a ProTactile Workshop, Self-Advocacy – Because It Matters, and Success in Higher Education.
Additional workshops focused on young adult engagement and parent-school collaboration.

The conference brought together community members, researchers, and clinicians to share knowledge, discuss the latest advancements, and support those living with Usher syndrome.

View Presentations:
(Click the icon on the top right of the screen below to view the full playlist, or click here.)