The University of Iowa Institute for Vision Research is
Conducting a $10M Campaign to
Develop Treatments for All Forms of Usher Syndrome
Usher syndrome is a genetic disorder that is the most common single cause of combined deafness and blindness and affects about 20,000 people in the US alone.
In December of 2016, Leo Hauser, an Arizona businessman who has lost much of his vision to an Usher gene, joined forces with philanthropists seeking cures for Usher 3A and Usher 2C to challenge the entire Usher community to raise six million dollars over the ensuing four years to accelerate the development of gene- and stem-cell-based treatments for all forms of Usher syndrome. Additional major donors later joined the effort on the "challenge side" so that from now through the end of 2020, these generous donors will match dollar for dollar all gifts made to the Kimberling Usher Research Laboratory at the University of Iowa until a total of ten million dollars is raised.
To support this campaign, go to: http://www.givetoiowa.org/usherchallenge.
“Although each of us is personally interested in a specific Usher gene, we realize that the people, strategy and infrastructure needed to cure our diseases are applicable to all types of Usher syndrome,” said Mr. Hauser. “We have decided to support the Kimberling Usher Research Laboratory in the Institute for Vision Research because of the institute’s three decade track record of success in the field of retinal genetics,” Hauser said. “We are also very impressed by their non-profit, non-commercial philosophy, their extremely low overhead, and the fact that they have manufacturing facilities for human gene therapy and patient-derived stem cell therapy under the same roof as the experienced scientists who are needed to make these therapies a reality,” Hauser added.
“We are very proud that our university has been a leader in the battle against blindness for so many years,” said Bruce Harreld, President of the University of Iowa. “These generous gifts will assure that this critical research continues to move as rapidly as possible,” he added.
“Funds raised through the IVR Usher Challenge will go directly to the laboratories and clinics pursuing the cures for Usher Syndrome,” said Edwin Stone, director of the Institute for Vision Research. “We envision a day in the not-too-distant future in which a gene therapy for any inherited eye disease can be manufactured and evaluated in an academic clinical trial for less than $20,000 per person,” he added.
“Philanthropic support like this allows us to freely share everything we do,” said Budd Tucker, director of the Dezii Translational Vision Research Facility in the Institute for Vision Research. “Every aspect of our work from the blueprints of our manufacturing facility to the composition of our tissue culture medium is non-proprietary and freely available to any institution that might be interested in joining the effort to get more therapies for inherited eye disease into clinical trial as quickly and inexpensively as possible,” he added.
All gifts are tax deductible. The University of Iowa Foundation is a 501(c)(3) tax-exempt organization, and the preferred channel for all private contributions that benefit the Institute for Vision Research.
The Kimberling Laboratory at the University of Iowa is also home to Project Usher, a philanthropically supported program that allows individuals with Usher syndrome who cannot afford commercial genetic testing to obtain a state of the art genetic test. Physicians interested in ordering a test through Project Usher can learn more at www.projectusher.org.
For more information about the University of Iowa Institute for Vision Research, visit http://ivr.uiowa.edu/.