A diagnosis of Usher Syndrome is a traumatic event for a family. There often appears to be no hope for the loved one suffering from the disorder. But while it is true that there is currently no cure for Usher Syndrome and few widely accepted treatments for some of it's symptoms, there is still hope.
People with hearing loss have more options for communication than ever before. Sign language still remains a viable communication option and new technologies like the cochlear implant and digital hearing aids offer access to quality sound to even the profoundly deaf. Researchers are making significant progress on the retinal degeneration experienced by most children with Usher syndrome as well. There is real hope that viable treatments will be found in the near future.
Hope here comes in many forms, however. The Coaltion offers families with Usher Syndrome the opportunity to connect with other families. We have the best and latest information on Usher Syndrome and count many of the world’s leading researchers among our members. We invite families to directly participate in our efforts to search for a cure, to get involved in helping their children. Here you are neither alone nor helpless.
Here, there is hope.