Usher Syndrome in Louisiana Symposium Coming Up March 28th

The Usher Syndrome in Louisiana 4th Symposium will take place March 28, 2020, at the Cecil J. Picard Center for Child Development & Lifelong Learning at the University of Louisiana Lafayette from 10 a.m. - 3 p.m. Registration begins at 9:30 a.m. The event, sponsored by LSU Health New Orleans and the University of Louisiana Lafayette, features keynote speaker Jennifer Lentz, PhD, associate professor at LSU Health New Orleans Neuroscience Center of Excellence, who conducts research on Usher syndrome.

The purpose of the event is to share knowledge and marshal resources to work together to address the leading genetic cause of deaf-blindness that disproportionately affects Louisianans.

Sessions include A Review of Usher Syndrome; Parents’ Practical Perspective on Raising a Child with Usher Syndrome; Current Research & Clinical Studies Associated with Usher Syndrome; Ongoing Natural History & Genetics Study in Louisiana; Prospective USH1C Natural History of Visual Loss & Imbalance Studies; and Questions & Answers with the Speakers.

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Leslie Capo

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From 2:30 - 4:30 p.m., participants have the opportunity to meet individually with Dr. Lentz and her team about enrolling in Usher studies and genetic testing.

To pre-register for the Usher Syndrome Symposium, email strotochaud@usher2020.org or call 877-926-0859.

According to the National Institutes of Health, Usher syndrome is the most common condition that affects both hearing and vision; sometimes it also affects balance. The major symptoms of Usher syndrome are deafness or hearing loss and an eye disease called retinitis pigmentosa (RP). One baby in about 25,000 is born with Usher syndrome. There are three clinical types based upon the severity and age of onset of symptoms. Type 1 Usher is the most severe form with profound deafness and balance problems at birth as well as blindness beginning in early adolescence. A single mutation in the USH1C gene accounts for nearly all type 1 Usher cases in Acadian populations.

“The overall goal of my research is to develop a therapeutic approach to prevent or cure the deafness and blindness associated with Usher syndrome (Usher),” notes Dr. Lentz. “At LSU Health New Orleans, we focus on Usher syndrome type 1C, which affects the Acadian populations of south Louisiana and Canada.”

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