You probably haven't heard of it either - or, if you have, you probably have learned about it from me. The thing is that Usher is just not all that common. I hadn't heard about it before my diagnosis, and now I have a wide network of friends and acquaintances who, like me, have this rare thing.

And what is it? 

Usher is the most common cause of combined deafness and blindness. There are varying levels of it, but it's a progressive genetic disorder - so yes, I am slowly experiencing progressive loss to both my hearing and my sight.

That. Sucks.

There's really no eloquent way to say it beyond that. It sucks. And while I am beyond grateful for the fact that I know it could be worse, I also feel compelled to do what I can to support research and fundraising and generation of awareness to find a cure.

Right now there are no cures for Usher Syndrome. 

Usher Syndrome Awareness Day is Saturday, September 15. Please consider making a donation to support me in my efforts to raise more awareness about Usher, and to support progress towards finding cures.

Please feel free to share my link - and - if you are unable to make a donation, that's okay - I appreciate your taking the time to read a bit about Usher. You can find more information here: https://www.usher-syndrome.org/