• Hello,

    has anyone else been a “sporadic” ALS case, but then learn that they have the C9 gene mutation? This just happened to my husband who is only 52.

    There is no history of ALS known in my husbands family and they are a large family. Grandparents living into their 80s. 2 cases of Dementia but both in their 80s.

    Does this mean that my 4 kids could also inherit the C9 mutation? And what would be their risk of getting ALS?
    this is what keeps me up at night!

    we just found this out and don’t see the geneticist for a month!
    my kids are between 18 and 22.


    • Hello Lori,

      My family has a significant history of ALS and a genetic mutation. In theory, your children would have a 50% chance of inheriting the mutation. Just because you have the mutation that doesn’t necessarily mean you will get ALS. In some families it seems to be more widespread, like mine. However, I do have a cousin that has the mutations, in her 70s with no signs of ALS. It is my understanding that this is an area that research is targeting. If your children are interested in learning more about volunteering for research let me know. I can help provide some information — but no pressure!!! It is a lot to take in.

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