I just received an email from a low-vision specialist in Indiana. An organization he belongs to, Eye Associates, is building an extensive website focused on achromatopsia. It will include information to educate people on the condition as well as provide the updates on accommodations, tests, genetics, etc. They are even planning a movie that will show how people with achromatopsia see.

Another section of that site will include what he called achromatopsia pioneers. These are the people who have worked to make achromatopsia better known. This will include Frances Futterman, the woman who started the first achromatopsia network from her home, and vision scientist, Knut Nordby. (Both had achromatopsia, both are now deceased.) I'm honored to find out they want to highlight the work I've done for achromatopsia, also. I started the achromatopsia convention in 2008, and wrote my memoir, My Blindy Girl. This is the story of how my daughter, Katy (born with achromatopsia) changed my view of the world.

I'm betting that all of us who are involved in achromatopsia in some way - either we have it or someone we love does - will love this site. It's a long time coming and I'm thrilled that it is. You can check out the group's other website at biopticdrivingusa.com.

I'll keep you posted when the site is available. All I can say is, thanks, Eye Associates. We can't wait to see your site.