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Being somewhat really familiar with this disease - having 3 direct family members die in 3 years - I don’t remember if they had the extreme exhaustion after doing fairly light things like putting away clothes - in a wheelchair but can still stand for small amounts of time with support but seems...

After being a member of this forum for some time as a family member of SOD1 family with the loss of my dad, brother and sister all within 4 years about 12 years ago - as well as being tested positive for the SOD1 - A4V gene 10 years ago and a patient in the Miami trials for about 8 years - my...