February 29th, 2012 is RARE DISEASE day…….. We would like to honor children with a rare disease for this month like our son Nicholas who has batten disease (LINCL). The statistics around rare disease are astonishing. 1 in 10 Americans is affected by some type of a rare disease. That’s a huge

Happy New Year and welcome to 2012! I did not post in December because I was extremely busy getting OPTN holiday mailing out on time before Christmas. I mailed 950 letters. I like to think they are Nicholas’s fan club. I feel lucky that so many would be interested in