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I am Melissa L Armstrong

a family member in a familial ALS family,
a family member of someone we've lost to ALS,
an ALS gene carrier,
someone who cared for a person we've lost to ALS

Texas


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.


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