Donation Supports LSU Health New Orleans Usher Syndrome Research

Jennifer J. Lentz, PhD, Assistant Professor at LSU Health New Orleans Neuroscience Center of Excellence, has received a $30,000 donation from the Ush One See Foundation to support her Natural History of Usher Syndrome in Louisiana research study.

“We are so grateful for the support from the Ush One See Foundation,” said Dr. Lentz. “This support is essential for conducting the important research in our laboratory that hopefully will lead to new therapies for the treatment of vision loss associated with Usher syndrome.”

The overall goal of Lentz’s research is to develop a therapeutic approach to prevent or cure the deafness and blindness associated with Usher syndrome (Usher), the most common genetic cause of combined deafness and blindness. Her lab focuses on Usher syndrome type 1C (one of three clinical subtypes of Usher syndrome), which affects the Acadian populations of south Louisiana and Canada. Approximately 6-8% of type 1 Usher cases are caused by mutations in the USH1C gene, which encodes the protein harmonin. The USH1C c.216G>A (216A) mutation accounts for nearly all cases of Usher 1 in Acadian populations.

“We are excited to be able to assist Dr. Lentz in this study to be able to understand the natural medical history and molecular type of Usher Syndrome in Louisiana,” notes Elise Faucheaux, President of the Ush One See Foundation. “This collection of data is necessary to guide a clinical trial in USH1C patients from Louisiana, who include my 6-year-old son, Hunter Faucheaux.”

Ush One See was founded in May 2017, in honor of Hunter Faucheaux. The foundation is working to raise awareness of Usher Syndrome in the Acadiana area. While raising awareness, Ush One See also raises funds that are going straight to research to help fund a cure for the vision loss aspect of Usher Syndrome.

“We held a 5K/10K race in Lafayette back in September called Fight for Sight, and we had over 680 participants,” says Faucheaux. “People are truly touched by the story of patients affected by Usher Syndrome, and the people of Acadiana stepped up – they want to help, and they want to be a part of the cure. And they are a vital part of the cure! We hope to keep the momentum going until a cure is fully funded and available for all patients with USH1C.”

This year's Ush One See race will be held on Saturday, September 16, 2017, in Lafayette.

To learn more about it and Ush One See, click here.