April 10, 2009
By Mark Dunning
It feels terribly presumptuous to believe that anyone would care what I was up to, but I know that I have found great solace in knowing that someone, anyone, was working on something, anything, that might move us toward a cure. So I'll post notes on what I hear and what I know about Usher syndrome research and hopefully that brings a little light in to lives of those coping with the diagnosis. We could all use a little hope.
Please contact me with any questions or corrections. I hold no illusions that I am an expert on any of the subjects that may be discussed in this blog, but I do have some very smart friends and I am in contact with the best researchers in the world. So if I don't have the right answer, I can probably find someone that does.
For parents of a child with Usher syndrome or families of people with Usher syndrome out there, please do not hesitate to contact me. We are developing a family network for Usher syndrome families and the Coalition can always use the help of any volunteers. Ultimately it will be the families that cure this, so we need your help.
