We had no idea the C9orf72 familial gene was even in our family until my older sister got drop foot then a nerve conduction test.

We had no idea the C9orf72 familial gene was even in our family until my older sister got drop foot then a nerve conduction test. We started the fight in 2020. I was her caregiver. It was an emotional and physical journey with my best friend. I told her we would adapt and figure things out as they come and that I would be with her every step of the way. I made sure she smiled and laughed by doing the most ridiculous things. I lost her 5/10/2024. The second worst thing that happened to me. The first was losing my husband 10 years earlier than her. I did genetic testing and I am positive for the gene mutation. So far I am asymptomatic, time will only tell. I hate ALS and I do believe we should have found a cure by now.