I'm new to this so bare with me. I've also been dealing with this FALS for a little over a year now and trying to bury my head in the sand but it's very hard. My grandfather died of ALS in 1985, the first in his family, age 53, and about 2 years after diagnosis. His family had never heard of the disease before my grandfather was diagnosed...so where did it come from? We found out last April (2007) my mom has it (she's currently 5. She is currently having a lot of pain and I'm trying to research what other ALS patients do to get through it. My mom has a sister she's distanced from but we do know so far, she has no symptoms or the disease. I have a sister and a brother. Between my sister and I we have 7 children. Because of the FALS my brother has decided to not have any children. I know of the people that get ALS, only 5 to 10% of them have FALS; I'm hoping to see other family stories like ours on this forum. But not really because it's such a terrible disease. I'm scared to pieces but have put my faith in God and TRY to live my life as fully as I can. Cindy