Dad, now cousin with ALS


New member
May 21, 2024
Loved one DX
My father died from ALS 9 years ago. Now my cousin, his nephew has been diagnosed.

So, I’m in early stages of considering genetic testing. Feel it’s more urgent because my daughter is in process of having kids. Has 2 and would like 2 more. They are also very pro adoption.

At this point I have a very specific question. I have read that it is has been found that certain types or sports or activities may turn the offending gene on and the disease will become active. Read this in ALS association. My daughter just finished running a marathon, her first, but often trains for half marathons. Running miles and miles everyday. Do you know if this type of activity is associated with activating disease in a positive gene?

Very sorry to hear about your dad and cousin.

There is much better data for the risk of contact sports and of course toxic exposures such as smoking and chemicals encountered in some professions, including military service. That cuts across sporadic ALS and of course other conditions more generally.

The physical activity association as a means of "gene activation" is far more tenuous, with studies on both sides and a high risk of confounding since all this is from questionnaires. But if your family (was your cousin?) hasn't been tested, you don't even know if a genetic risk exists, let alone based on what gene.

I for one wouldn't not run marathons based on a combination of two unknown variables, and your daughter is a generation removed from your cousin's age of onset.

Since some genetic forms are further along in the treatment continuum, that would be another reason to consider testing IF it is going to inform decisions such as kids (in which case the person that would be most relevant for testing would be your daughter). However, a positive result may have implications for insurance, housing, etc. as well as psychological wellbeing, and so should be considered carefully. There are genetic counselors in most major medical centers.
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I hope the cousin/ nephew is being tested. Then you know if there is something to look for in genetic testing. You might want to look into ALL ACCESS ALS. It is a huge study of PALS and carriers. It hasn’t started yet but when it does they will do genetic testing of potential carriers. If google the NEALS consortium you can find the recent webinar which explains things in great detail. Without a known mutation I am not sure if you would qualify with onyl two affected relatives but you could ask.

The exercise thing is primarily c9 but even with that the researchers did not recommend backing off exercise. They are doing more research now including a large c9 group