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My initial thread won't let me update there. I am creating this one to provide updates, as asked. Just wanted to thank Nikki for her help so far. Background: M, late 20s. 4 known cases of fALS/FTD due to the c9orf72 gene in family. Currently a CALS for my mother who has leg onset. I've been...

Mum's leg is starting to get quite bad, she can still just about make her way through our park walks with lots of bench stops, but I'm wondering what I should make a priority in case this relatively slow lack of progression hastens up. My brother and I are trying to buy a house so she can move...

I’m 26. Male. My mother and great auntie were diagnosed. My mother very recently actually. My family has dementia and Alzheimer’s in its lineage - my mother's sister past at 68 years old of sepsis but she had very bad dementia towards the end. And my mother's father had Alzheimer's. I am...