My brother put us in contact with a genetic counselor so we could learn more about my genetic status. Of course, knowing my mutation does not make the mutation go away. But having this knowledge was important to me.
The decision whether or not to undergo genetic testing is a personal one, and anyone considering it should do what is right for them. One potential benefit of testing, in my mind, is the chance to contribute to genetic ALS research. Certain clinical trials are open to people with specific genetic mutations—mutations which can be identified through genetic testing.