My mother has recently been diagnosed with ALS. My aunt's doctors have disagreements as to whether or not she had ALS before she died. Is familial ALS only when another immediate family member has it? If my mother has familial ALS, I believe my chance of getting it is 50/50, right? Does this mean that my kids also have a 50/50 chance? Or would I have to get ALS for me to pass this on to my kids?

This is not so much a reply as joining your request for information. My father died in 1977 of ALS, his brother (my uncle) in 1975, and now this year my aunt (my father's sister) has been diagnosed with ALS. I, too, wonder about my chances and the chances of my children inheriting the gene for this disease. I have corresponded with Mara Gaudette, a genetic counselor at Northestern University in Chicago. One interesting point she made in our family's case is that we have not seen the gene passed from one generation to the other. All cases so far have been within the one generation and from the one set of parents. There were no cases in the previous generation that we know of. So time will tell whether the gene even passes to the next generation. I am the oldest of that next set of children, but my uncle died at age 58, my father at age 61, and my aunt is 67. That was interesting and rather calming to me that there was the possibility, at least, that the gene would not pass to me, even though familial ALS normally does.

Originally posted by CAROLBABE:
This is not so much a reply as joining your request for information. My father died in 1977 of ALS, his brother (my uncle) in 1975, and now this year my aunt (my father's sister) has been diagnosed with ALS. I, too, wonder about my chances and the chances of my children inheriting the gene for this disease. I have corresponded with Mara Gaudette, a genetic counselor at Northestern University in Chicago. One interesting point she made in our family's case is that we have not seen the gene passed from one generation to the other. All cases so far have been within the one generation and from the one set of parents. There were no cases in the previous generation that we know of. So time will tell whether the gene even passes to the next generation. I am the oldest of that next set of children, but my uncle died at age 58, my father at age 61, and my aunt is 67. That was interesting and rather calming to me that there was the possibility, at least, that the gene would not pass to me, even though familial ALS normally does.

Thanks for the info. Same circumstances in my family. No previous generations that are none and none in subsequent generations yet. Prayers to you and your family.