Usher 1B Workshop

The urgent mission of the Foundation Fighting Blindness is to support the development of treatments and cures for inherited retinal dystrophies, including Usher syndrome, which is the most common genetic cause of combined deafness and blindness. There are three different types of Usher syndrome, defined by its severity, each having subtypes based on the genetic cause. Although individuals with Usher type 1 demonstrate similar symptoms, the genetic causes differ. Usher 1b is the most common form of Usher type 1 and accounts for 40% of all cases. There are currently no treatments for USH1B.

This Workshop is designed to bring together leading experts from academia and industry, to discuss openly, and in detail, what is known about Usher 1B disease pathology, disease models, clinical characteristics and therapeutic approaches. The agenda will also include a roundtable on emerging therapies with representatives from industry. Importantly, we will also hear from affected individuals and their families in order to ensure their perspectives for care, treatment and therapies inform both research and clinical studies.

The Workshop will be held virtually on September 13, 2021 from 9 a.m. to 5 p.m. CST.  This full day meeting will be co-chaired by Dr. Shannon Boye and Professor José-Alain Sahel, leaders in the USH1B field.

Given the current travel and gathering size restrictions due to COVID-19, we have decided to hold the Workshop in a fully virtual format. ASL Interpreters and Closed Captioning will be provided.

If you have any questions about the workshop, please email lkenney@fightingblindness.org .