Usher syndrome is the most common genetic cause of combined deafness and blindness. More than 400,000 people are affected by this disorder worldwide. There is currently no cure for Usher syndrome. 

You have the power to change that.

The Usher Syndrome Coalition is working to raise awareness and accelerate research, while providing information and support to impacted individuals and families. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families. Learn more and get involved.

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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.

Since 1995, University of California, Irvine stem cell researcher Magdalene J. Seiler, PhD has pursued promising research into the development and usage of retinal sheet transplantation. The treatment is based on transplanting sheets of stem cell-derived retina, called retina organoids to the back of the eye with hopes of re-establishing the neural circuity within the eye. Recently, Seiler has received a $4.8 million grant from the California Institute of Regenerative Medicine (CIRM) to continue to develop a stem cell-based therapy for retinal diseases such as retinitis pigmentosa.

The number one question asked of the Usher Syndrome Coalition is “What is the status on treatments and/or a cure for Usher syndrome?” In order to be able to answer this question, the Usher Syndrome Coalition sponsors an annual conference focused exclusively on the latest efforts and findings of Usher researchers worldwide. This year, for the first time, our 10th annual USH Connections conference, along with the fourth international symposium for scientists, will be hosted by our partners in Germany.

A group of research physicians have discovered that using stem cells from a person’s own bone marrow has reported success in improving vision for patients with Retinitis Pigmentosa. The bone marrow stem cells come from the same person; therefore, there can be no rejection. Of the 33 eyes studied, 45.5% of individual eyes improved and 45.5% remained stable over the follow-up period when they typically have been worsening. Vision improvement is 98.4% likely to be a consequence of this treatment.

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