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. Members bring their expertise and commitment to the work of the Coalition, collaborating with partners and researchers from some of the finest international organizations in the world. In short, the Coalition for Usher Syndrome Research strives to be the most comprehensive source of information on Usher Syndrome and the tremendous efforts being made to find a cure.
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.
Text of the testimony submitted by Mark Dunning, father of a daughter with Usher, before the House Labor Health and Human Services sub-committee on March 28, 2014.
I read Mark's latest blog post with interest and had two reactions: I thought Mark's words were generous and brave and smart, and I also thought parents and families might want to hear from a person who lives with an adult who has Usher syndrome.