Hi' Chuck, I am so sorry to hear about you recent
news, my son has this desease, he is 31, and has had it
for the last 10 yrs, he has also lost both legs, one
below knee and the other above knee, he is now starting
to lose his fingers on his right hand, it is
dredfull, I have only just found this site, so hopefully I
can keep in touch with people like youself, there are
not too many people have heard about it so this is
good for me. and maybe we can get some research, or a
cure, gene therapy was at one stage a great hope for
us. how about you? have you any info.? we are in
Canada. can you please get back to me thank you.