Engaging families with Usher syndrome in the efforts of the Coalition is critical to finding a cure. Families are the fund raisers, the organizers, the volunteers, and research subjects. When treatments go to clinical trial, it will be engaged families that participate. In short, a cure can not be found without the grass roots support of those with Usher syndrome.
However, the diagnosis of Usher syndrome is very traumatic to a family. It effects not only the individual afflicted, but all members of the family; mom and dad, grandma and grandpa, brother and sister. Often what they seek most is simply someone with similar experiences, someone with whom they can discuss doctors, tests, treatments, education, and expectations. Without it, they are often lost and unable to participate in those activities critical to finding a cure.
That's why joining the Coalition Family Network is so important. It takes little more than your time and a willingness to share experiences. No names or contact information will be given out to anyone without your prior approval of each request.
If you are convinced, you can register by clicking here.
If you would like to learn more, please contact Mark Dunning at firstname.lastname@example.org.