The Coalition for Usher Syndrome Research is dedicated to helping families cope with Usher Syndrome while working diligently to find a cure. Our goal is simple: Provide hope to families with Usher Syndrome. Hope here comes in many forms, from the opportunity to connect with other families, to the ability to access the latest information from the world's leading researchers, to the chance to directly participate in the search for a cure.
The Coalition counts a number of leading institutions and researchers among its members. We are truly national in scope with member institutions from coast to coast and more joining regularly. Beyond the United States, our members share information with the finest international institutions. In short, the Coalition for Usher Syndrome Research strives to be the best place for information on Usher Syndrome.
So please join us. There is hope.
The next International Symposium on Usher Syndrome will be held in conjunction with our sixth Usher Syndrome Family Conference in Boston, Massachusetts, July 10-12, 2014.
Overview of a study to improve the molecular diagnosis in families with USH2A by screening USH2A for duplications.
Bella wants to drive. I knew this was coming. I've seen it on the horizon for the last eight years. I've put off addressing it as long as possible in hopes that some epiphany would strike me on how to handle the situation. It hasn't happened.
"The last I remember seeing the stars / they had turned around on their stellar routes..." Mani Iyer, a poet with Usher Syndrome, shares a beautiful piece reflecting on his own experience and the grand universe.