USH Researcher News

It is with great sadness that we share the news that Dr. William Kimberling passed away on Saturday, November 4th, surrounded by his family.

The Sanford Health Lorraine Cross Award worth $1 million was established to award game-changers in medicine. The award is not to have people to live forever, but to “live life without suffering.” The winners of the award are Dr. Jean Bennett and Dr. Katherine High of the University of Pennsylvania, pioneers of gene therapy research. The award is in recognition of the improvements in gene therapy that led to an FDA-approved treatment for Leber’s congenital amaurosis.

What this means for Usher syndrome: This award not only reflects the importance of gene therapy for the treatment of genetic disorders but could accelerate research in Usher syndrome through gene therapy.

The Kimberling Usher Research Laboratory in the Institute for Vision Research is pleased to announce an increase in their campaign goal to $10 million. This increase is possible because additional major donors have joined the "challenge side" of the matching effort so that they can now match every gift for Usher Syndrome Research, dollar for dollar, until $10 million is raised.

One of these studies in Pennesi's trials is on the UshStat gene therapy trial for Usher syndrome Type 1B (MYO7A). More information on that study in the link below:

"Dr. Imanishi is being recognized for his remarkable contributions to the field of vision science and the significant impact of his research" -Alan R. Morse, JD, PhD, President and CEO of Lighthouse Guild.

Press Release: (Columbia, MD) - The Foundation Fighting Blindness Clinical Research Institute (FFB-CRI) has announced an investment of up to $7.5 million to advance a promising, emerging drug treatment for retinitis pigmentosa (RP) into and through a Phase II clinical trial. Read More...

The Usher Syndrome Coalition is posting this on behalf of the University of Alabama at Birmingham’s (UAB) Genetic Counseling Training Program:

UAB student Caitlin Wright is currently recruiting parents for a study examining the psychosocial impact on parents who have children diagnosed with Usher syndrome. With this study, they hope to compare parent experiences for those whose children received a diagnosis at a young age to those who received a diagnosis at a later age. Participation involves a 30 minute interview in English (by phone or in person).

Dr. Sahel plans to try to restore sight using several breakthrough treatments he helped pioneer at the Vision Institute, a research center he founded in Paris.

22 young investigators - including Astra Dinculescu, Ph.D., Usher syndrome researcher - attended AEVR’s annual AMD Congressional briefing entitled 'Advances in the Diagnosis and Treatment of AMD and Retinal Diseases.'

Geneticist Heidi Rehm, founding member of the USC, is "at the forefront of a genetic revolution in medicine..."
Read the full article about her career and work in Middlebury Magazine.

Usher syndrome laboratory named in honor of William Kimberling, Ph.D.

Christine Petit and Karen Steel won the Brain Prize of 1 million euros in part for their research on Usher syndrome.

Alstrom Syndrome UK would like you to be aware that Alstrom syndrome can be misdiagnosed as Usher syndrome. Learn more about Alstrom Syndrome here...