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Angel: I was, it was probably, 10 years old, 9 years old when everybody started getting tested. We discussed the disease, we discussed the potential of me having the disease, we discussed what would happen if I got sick. We discussed what would happen if that gene was passed on to our children. And it was pretty scary.  

Dane: I started going and getting tested because I started seeing myself happening, what I see my grandfather was going through. Well now I'm more worried because of my children, now that I have it. Not knowing if my children have been tested or if they have it or not, or if they've been told, or ...  

Mark: My father died of the disease. In the 80's. I didn't test with the rest of the family. I figured, what's the need to know? I had learned through several of my relatives, studies have been ongoing, and that there is in fact some hope out there for those who have this. So, I went ahead and tested. 

Tonya: I got tested a year ago. Because I wanted to know, I don't think so much for myself. I think because I have three girls that need to know.