Recent content by jlcarnahan

Thank you. We know in or family it is not a matter of "if" but rather "when". We told our daughters (11 and 14) yesterday and that is the most difficult thing I have ever done. Just trying to keep one foot in front of another.

My husbands side of the family seems to have a very strong persistent gene. My husband is now the 8th person in his family to be diagnosed. I would love to connect with others who are familiar with SOD1 and/or FALS. My experience was with his father who passed 8 months after diagnosis at 53 (we...