"Watching my mom die of ALS was one of the most awful things I’ve gone through. I don’t want my children to see me suffer like that."
For almost a decade, I’ve fought for a cure for a disease I don’t even have yet.
In 2018, when my mom was dying of the fatal neurodegenerative disease amyotrophic lateral sclerosis (ALS), I learned that I carried the same mutated gene, C9orf72, that caused her disease. That means I will likely either develop ALS or frontotemporal degeneration (FTD), another disease that is caused by the C9 mutation.
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— Source: STAT News (https://www.statnews.com/2026/03/16/genetic-als-research-cure-trump/)
