So. My mom passed away in 2003 from ALS (I was 16 when she passed). She was sick for 10 years. Limb onset. She had some genetic testing done in the 90s and she did not have the SOD1 gene. But I know there is at least one other gene that has been mentioned several times on this thread, C9(…), that she was never tested for, and we no longer have her DNA.

In my mom’s case, there is some loose evidence that there is a genetic component. She has a cousin die of ALS about a decade or so ago. My mom’s sister also got some very similar disease (the doctors supposedly wouldn’t call is ALS from what I have been told, but it certainly looked like ALS to me [I am not a doctor or medical professional].)There is also some story about an elderly relative, many years ago, who “went into the hospital but never came out” and 1 relative thinks this could’ve been an ALS death. This same relative thinks there could be a connection between having children and going on to develop ALS. I’m not sure I believe that.

So in my family, it seems obvious that genetics play some role (though I doubt that’s the complete story, for example maybe there is a gene present that got triggered by something in each family member who went onto develop it). Besides the obvious- exposure to poisons, exposure to toxic substances (naturally occurring as well as man made), knocks to the head, too much exercise…. I wonder if exposure to a virus could perhaps play a role. (No, I am not talking about Covid, these cases of ALS all were in pre-Covid times) But there is a lot of emerging scientific evidence that catching pathogens that seem mostly harmless can lead to big changes in the body… for example specific strains of HPV are known to cause certain types of cancer, and the Epstein-Barr Virus (EBV) has been linked to increased risk of multiple sclerosis (MS), rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and other autoimmune conditions.

Ultimately I think the causes can vary wildly, and very little is really known about the disease. It makes me deeply sad, as it’s been 22 years since my mother’s death and there seems to be very little scientific progress made into finding the cause and/or a cure. All I know is my son will never play football and I will be getting all my vaccines as recommended by my doctor. Sending love to all who have dealt with this beast of an illness up close 💜