two of my late brother's daughters, one about 42, the other about 52,both unaffected, and my sister,71, also unaffected, and I had SPECTs in February of 2006 at the IND in New Haven.
They mentioned the possibility of repeats in the future, but we have not been contacted so far. My brother was Dxd in 1998 and passed away in 2004. My mother also had young onset (35 y). I called IND in December last year to ask if there were plans for our family to return, but was told that there was no plan to do so at that time.

Robert