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All too often families are told that there is nothing that can be done to help a family member with Usher syndrome. That is not true. There is a lot that you can do. You can educate yourself. You can educate others and raise awareness of Usher syndrome. You can get involved in fundraising for Usher syndrome research. You can help plan events or volunteer at events that help families with Usher syndrome. You can join familiy networks or simply trade e-mails with a newly diagnosed family. Or find a new way to help.
Alll these things help your loved one. Just as importantly they help you. They temper that feeling of hopelessness that often accompanies the diagnosis. There is something you can do.
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