When our daughter, Lara, was diagnosed with achromatopsia in 2000, my wife and I found the Achromatopsia Network website and publications to be a tremendous source of information and inspiration. Best of all, we learned that we were no longer alone.
I think we first heard about the illness of Frances Futterman (the organiser of The Achromatopsia Network) - and her husband, Mark - from The Achromatopsia Network Journal itself. Rumours and confirmation of their deaths in 2005 came via the Yahoo! Achromatopsia Group (now migrated to Groups.io) and from other sources.
My worries about the continued availability of the Achromatopsia Network website were confirmed when a page appeared that explained that the ISP would "maintain this website until March 7, 2008, at which time these web pages will no longer be available". I realised that something would have to be done if this valuable resource was not to be lost.
I contacted the ISP for any further contact information for the Futterman family, but he had none.
I contacted the domain registrars (GoDaddy), but they couldn't help.
I even contacted the other sources, who kindly promised to forward email to the Futterman's son, but I got no response.
So, finding no other avenues to explore, I finally decided to mirror the website myself. This would provide some continuity of service, for when the real website disappears, and in case I am unable to register it myself when it finally becomes available again. I don't feel entirely comfortable with this, since the material is all copyright of Frances Futterman. Presumably this copyright now belongs to the Futterman family, but if I can't contact them, or they won't contact me, then what else can I do?
If a member of the Futterman family reads this, I would be very grateful if they would contact me and allow me to regularise this situation, one way or another. Thank you.
I don't plan to make any income with this site. I'm using Google's webhosting service, for simplicity sake, but I won't get any share of any adverts they might attach to the site. (At the moment they don't attach adverts, but I suspect that this might change in the future). I also don't plan to make any great changes to the content of the site, or the books you can download from here, as I simply don't have the time for it at the moment.
Grateful thanks to Frances Futterman, for everything you see here, and for her great work with The Achromatopsia Network.